PART 2 “EVIDENCE AND CASE STUDIES”

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© 2010 by World Health Communication Associates Ltd.
All rights reserved. Up to 10 copies of this document may be
made for your non-commercial personal use, provided that
credit is given to the original source. You must have prior written
permission for any other reproduction, storage in a retrieval
system, or transmission in any form or by any means. Requests for
permission should be directed to World Health Communication
Associates, Little Harborne, Church Lane, Compton Bishop,
Axbridge, Somerset, BS26 2HD, UK. World Health Communication
Associates is UK limited company no. 5054838
registered at this address; e-mail: franklin@whcaonline.org;
tel/fax (+44) (0) 1934 732353.
Cataloguing Information:
ISBN 978-1-907620-00-3
Published by World Health Communication Associates Ltd
This manual is a publication of the WHCA Action Guides Project.
Franklin Apfel, MD, MHS, WHCA Managing Director
Kara L Jacobson, MPH, CHES, Associate Faculty,
Rollins School of Public Health of Emory University
Ruth M Parker, MD, Professor of Medicine,
Emory University School of Medicine
Julia Taylor, Director, WHO Healthy Cities Programme, Liverpool
Tony Boyle, Neighbourhood Public Health Manager,
Liverpool Primary Health Care Trust
Joanna Groves, CEO,
International Alliance of Patients’ Organizations
Jeremiah Mwangi, Senior Policy Officer,
International Alliance of Patients’ Organizations
Scott Ratzan, MD, Vice President Global Health, Johnson & Johnson
Carinne Allinson, Editor, World Health Communication Associates
Cover and layout design by Tuuli Sauren,
INSPIRIT International Communications, Brussels, Belgium.
Printed by Edition & Imprimerie on recycled, chlorine-free paper
with vegetable-based ink.

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TABLE OF CONTENTS
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8ystem demonds ond comp|ex|ty 13
8u||d|ng |nd|v|duo| sk|||s 15
8FCI|ON 2: WPY |8 PFA|IP ||IFkACY |MPOkIANI? 18
¥ery common 18
Assoc|oted w|th poorer heo|th ond weo|th 18
Assoc|oted w|th mony odverse heo|th outcomes 20
P|gher heo|th core costs 21
8FCI|ON 3: POW |8 PFA|IP ||IFkACY MFA80kFD? 23
3.1 Current meosurement too|s-|nd|v|duo| sk|||s ond ob|||t|es 24
3.2 Meosur|ng the demond ond comp|ex|ty s|de-heo|th
||terocy |ntervent|ons 26
3.3 8corecords 28
3.4 A meosure of heo|th deve|opment 29
8FCI|ON 4: WPAI CAN |ND|¥|D0A|8, AGFNC|F8 AND
8Y8IFM8 DO IO 8IkFNGIPFN PFA|IP ||IFkACY? 30
4.1 Peo|th systems 30
Cose 8tud|es
1. Meet|ng the Peo|th Core Needs of Co||forn|o's
Ch||dren: Ihe ko|e of Ie|emed|c|ne 40
2. New Zeo|ond Orgon|zot|on for kore D|sorders
(NZOkD)-Webs|te kesources 42
3. Pe|v|c Po|n Network, Dorset Fndometr|os|s Pro|ect, 0k 44
4. Pot|ent 0n|vers|ty Progromme (Concer Pot|ents, Peru) 45
5. CONCF8|k - Fert|||ty Core Compo|gn, Argent|no 48
ó. Amer|con Chron|c Po|n Assoc|ot|on Groph|co|
Commun|cot|ons Ioo|s, 08 50
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4.2 Fducot|ono| systems 52
Cose 8tud|es
1. 0C|A/J8J Peodstort Progromme, 08 56
2. 8yncope Irust And ke0ex Anox|c 8e|zures (8IAk8)-
8h|ne o ||ght on Fducot|on, 0k 58
3. keg|ono| Ch||dren's Ant|retrov|ro| Iheropy (AkI)
||terocy Ioo|k|t, Afr|co 60
4. 8eot |tI P|¥/A|D8 Ireotment ||terocy 8er|es,
8outh Afr|co 62
5. 8peok|ng 8ooks, 8outh Afr|co 63
ó. Open, D|stonce ond F|ex|b|e |eorn|ng (ODF|) |n
P|¥/A|D8 Prevent|on ond M|t|got|on for Affected
Youth, 8outh Afr|co ond Mozomb|que 64
7. Pos|t|ve Act|on for Ireotment Access (PAIA), N|ger|o 66
4.3 Med|o morketp|oces 68
Cose 8tud|es
1. 8ou| C|ty, 8outh Afr|co 71
2. Pro|ect kod|o, Modogoscor 74
3. kod|o Apoc, 0gondo 76
4. Mov|ng Fom||y P|onn|ng Progroms Forword:
|eorn|ng from 8uccess |n Zomb|o, Mo|ow|, ond
Ghono. Ihe kepos|t|on|ng Fom||y P|onn|ng Cose
8tudy 8ynthes|s keport 78
5. Andrew |ees Irust, |mpoct Fvo|uot|on of
Pro|ect kod|o 8|DA, Modogoscor 80
ó. A|om 8|ms|m Outreoch Progrom, Fgypt 82
4.4 Pome ond commun|ty sett|ngs 84
Cose 8tud|es
1. Po|||tothyo Pe|p-||ne Centre, 8ong|odesh 86
2. 8oc|et|es Iock||ng A|D8 through k|ghts (8IAk) 88
3. Moterno| ond Newborn Core Proct|ces omong the
0rbon Poor |n |ndore, |nd|o: Gops, keosons ond
Potent|o| Progromme Opt|ons 90
4. A Commun|ty-8osed Peo|th Fducot|on Progromme
for 8|o-Fnv|ronmento| Contro| of Mo|or|o through
Fo|k Iheotre (ko|o|otho), |nd|o 92
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5. 'I8 C|ubs', Fth|op|o 93
ó. ||verpoo|'s Cho||enge, 0k 95
4.5 Workp|oce sett|ngs 97
Cose 8tud|es
1. Prevent|ng P|¥/A|D8 on kood Pro|ects |n Ch|no 99
2. Adherence to Ant|retrov|ro| Iheropy |n Adu|ts:
A Gu|de for Iro|ners, kenyo 101
4.ó Po||cy-mok|ng orenos 103
Cose 8tud|es
1. North kore||o Pro|ect: from demonstrot|on pro|ect
to not|ono| oct|v|ty, F|n|ond 106
2. 8outhern Afr|co P|¥ ond A|D8 |nformot|on
D|ssem|not|on 8erv|ce (8AfA|D8) 108
3. Why |onguoges Motter: Meet|ng M|||enn|um
Deve|opment Goo|s Ihrough |oco| |onguoges 110
4. Fmpowerment ond |nvo|vement of Iubercu|os|s
Pot|ents |n Iubercu|os|s Contro|. Documented
Fxper|ences ond |ntervent|ons 112
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FOREWORD
The World Health Communication Associates (WHCA) Health Literacy
Action Guide Part 2, “Evidence and Case Studies”, is presented as a practical
resource for use by local, national and international health, education and
development advocates and agencies that are working on and/or planning to
take action to enhance people’s health literacy. It builds on Part 1, “The Basics”,
which was published on the occasion of the United Nations Economic and
Social Council (ECOSOC) meeting in Geneva, Switzerland in July 2009. Ministers
of State and Finance who were gathered at that meeting called for action
plans to enhance health literacy on all levels. To assist in this process, Part 2
of the WHCA Health Literacy Guide series includes a more detailed review of
evidence and, importantly, case studies of interventions that have been taken
in a variety of settings in many different countries.
As with the WHCA Health Literacy Guide Part 1, “The Basics”, actions described not
only focus on individual behaviour change but also look at initiatives being taken
to strengthen and adjust systems in order to address institutional and structural
deterrents to health literacy, make information more accessible and understandable,
and make ‘navigation’ through health, education systems and work, community and
policy-making settings easier. In so doing, the guide builds on the interactive health
literacy framework rst presented by Ruth Parker at the US Institute of Medicine
Roundtable on Health Literacy in 2009.
The case studies included in Part 2 have been gathered by the International
Alliance of Patients’ Organizations (IAPO), the Liverpool Healthy City Project, and
through a review of relevant literature, particularly submissions to the Communication
Initiative (CI) website (http://www.comminit.com/). The guide writing group wishes
to thank Warren Feek, Deborah Heimann and the whole team of CI for their support
to this project and to the many others who use the CI site as a prime source of health
communication information and exchange. We also want to thank Jeremiah Mwangi,
Julia Taylor, Kate Hodgkin, Mike Jempson and Carinne Allinson for collecting case
studies and editing guide materials. The authors are grateful to all those people,
projects and agencies who have shared their work with us. Special thanks to Stacy
Cooper Bailey and Michael S. Wolf for use of their materials in sections 2 and 4.
Additionally, we wish to thank Tuuli Sauren for her creative design work, Steve Turner,
Erik Luntang, Kara Jacobson and the International Council of Nurses for use of their
pictures and posters.
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Part 2 of the WHCA Health Literacy Guide series also includes the ICN Advocacy
Guide as an annex. The action framework presented in this Advocacy Guide serves
as an excellent ‘tool’ and resource for enhancing eorts of those working on health
literacy, particularly in the policy making arena. We are grateful to David Benton
and Linda Carrier-Walker from the ICN for their support of the development of the
Advocacy Guide and for permission to reprint it here. We also thank Scott Ratzan for
allowing us to reprint his health communication glossary. Finally, we wish to thank
WHCA, IAPO, Johnson and Johnson, ICN and the Liverpool Healthy City Project for
their support to this project.
The guide has been developed through a process which has involved all the
authors and their extended networks and continues to be a work in progress. Updates
will be posted on the WHCA website: www.whcaonline.org. In addition to sharing our
approaches with you, we would like to invite readers to give us some feedback about
whether the conceptual approaches described herein make sense in your contexts
and to contribute case studies for inclusion in future editions of the guide. For Part
3 the development team is particularly interested in gathering evidence and case
studies about the relationship of Health Literacy to Health Inequities and identifying
useful interventions which address both of these challenges.
Please forward any comments to: franklin@whcaonline.org.
For the Guide Development Team
Franklin Apfel
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Poor health literacy skills are very common. Based on studies in several countries
one can assume that 20-50% of the people in this picture will have trouble obtaining,
understanding and using health information.
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SUMMARY
Health Literacy at a Glance
WHO IS THIS GUIDE FOR?
This guide is for health professionals, educators, policy makers and advocates who
wish to improve individual and population health literacy. This Health Literacy Action
Guide summarises current knowledge on why health literacy is important and how
we can improve health literacy.
WHAT IS HEALTH LITERACY?
Health literacy refers to a person’s capacity to obtain health information, process it
and act upon it. Health literacy skills include basic reading, writing, numeracy and the
ability to communicate and question. Health literacy also requires functional abilities
to recognise risk, sort through conicting information, make health-related decisions,
navigate often complex health systems and ‘speak up’ for change when health system,
community and governmental policies and structures do not adequately serve needs.
People’s health literacy shapes their health behaviours and choices—and ultimately
their health and wellbeing.
WHY IS HEALTH LITERACY IMPORTANT?
There is strong scientic evidence that shows that poor health literacy leads to less
healthy choices, riskier behaviours, poorer health, more hospitalisations and higher
health care costs. Poor health literacy has been shown to be a major public health
problem in all countries where the issue has been studied. Very large numbers of
people in both developed and developing countries have poor health literacy skills.
In the US, for example, about 90 million adults—half of the adult population—are
thought to lack the literacy skills needed to eectively use the US health care system.
WHY THIS GUIDE?
Poor health literacy is not just an individual problem but a systemic societal problem.
It is best addressed when information, education and all types of communication
from health and other services are aligned with the skills and needs of their users.
While poor health literacy skills are common and have been found to be a signicant
determinant of health, to date there has been little systematic corrective action in
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most countries. Meeting in Geneva in July 2009, the United Nations Economic and
Social Council (ECOSOC) acknowledged this deciency and called for the development
of health literacy action plans at all levels. This guide provides a framework for such
action and identies useful interventions that people and agencies can take to
strengthen health literacy.
SIX KEY AREAS FOR INTERVENTIONS
This guide focuses on action in six key systems or settings: health and education
systems, media marketplaces, home and community settings, workplaces and policy-
making arenas at all levels. Actions and structures within these settings may either
facilitate or be a barrier to the development and expression of health literacy skills.
Case studies, from all six WHO Regions, are included that describe a wide variety of
interventions in each of these six areas.
ORGANISATION OF THE GUIDE 6X6
The guide is organised into six sections, addressing six key questions:
Section 1: What is health literacy?
This section denes health literacy and describes the demands and complexities of
dierent systems and settings, which shape people’s ability to access, integrate and
act on health information.
Section 2: Why is health literacy important?
This section looks at the size of the problem and briey reviews evidence of its impact
on health, wellbeing and health system costs.
Section 3: How is health literacy measured?
This section looks at measurement tools for assessing individual health literacy skills
and competencies, as well as the health literacy ‘friendliness’ of the systems and
settings where health information is obtained.
Section 4: What can individuals, agencies and systems do to strengthen
health literacy?
This section looks at interventions in six key systems and settings: health systems,
education, media health information marketplaces, home and community, workplace
and policy-making arenas.
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Section 5: How can we advocate for more attention, investment and
action to strengthen health literacy? Messages to Key Stakeholders.
This section identies messages to key stakeholders and describes specic health
advocacy communication strategies.
Section 6: What should be the components of a national or local health
literacy strengthening action plan? Building national and local health
literacy action plans.
This section suggests steps that can be taken to develop systematic approaches to
enhancing health literacy.
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SECTION 1: WHAT IS HEALTH LITERACY?
This guide defines health literacy as “The capacity to obtain, interpret and
understand basic health information and services and the competence to use
such information and services to enhance health.”
(Ratzan & Parker 2000; IOM 2004)
Health literacy ‘capacity and competence’ is not just determined by an individual’s
basic literacy skills. It is also dened by the interaction (or alignment) of these skills
with the demands and complexities of the systems within which information is
sought, interpreted and used (see Figure 1). Health literacy ‘capacity and competence’
varies by context and setting. It is dependent on individual and system factors. These
factors include both user and provider communication skills and knowledge of health
topics, culture and the specic characteristics of the health care, public health and
other relevant systems and settings where people obtain and use health information
(Healthy People 2010). When these services or systems, for example, require
knowledge or a language level that is too high for the user, health will suer.
Figure 1. Health Literacy Framework (Parker R, in Hernandez 2009, p.91)
Over 300 studies in the US and UK, for example, demonstrate that printed
materials, including consent forms, and web-based information sources are written
in language above the average reading ability of most of their adult populations (IOM
2004).
Action to enhance health literacy, therefore, has to focus on both
improving individual skills and making health service, education and
information systems more health literacy friendly. Health literacy friendly
Demands/Complexity
Skills/Abilities
HEALTH
LITERACY
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systems and settings are ones which actively measure, monitor, evaluate and adjust
their communications to meet the needs (and skills) of their users.
SYSTEM DEMANDS AND COMPLEXITY

This guide identies six key systems and settings—‘domains of inuence’—which
help shape both the development of health literacy skills and their expression (see
Box 1).
System Demands
and Complexity
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Navigating increasingly complex health systems is a challenge for all users. Those with poor
health literacy skills are particularly challenged. Health care and other agencies can help
by ensuring their signposting , consent forms and other written materials are clear and
understandable. If you were looking for the pharmacy, does this sign help or confuse?
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BOX 1 : SIX DOMAINS OF INFLUENCE ON HEALTH LITERACY
(adapted from Kickbusch & Maag 2008)
Health systems — Health systems play a major role in developing individual and
population health literacy skills. Health systems can be made more health literacy
friendly in a variety of ways. Workers may be trained to recognise the specic needs of
users and assist them in navigating systems. Information—such as forms, signs and
letters—can be made more accessible and understandable. If done appropriately, this
can help align system demands to user skill levels and improve user ability to access
health systems, assess risks, select appropriate pathways of care and engage in self-
care. Health systems can also advocate for and shape the ‘health literacy friendliness’
of other systems and settings. They can do this by raising awareness of the negative
health consequences of weak health literacy skills and, importantly, identifying good
practice and advocating for more eective policies and interventions.
Educational systems — Schools and other formal and informal educational
establishments play a major role in developing literacy skills and fostering literacy
in all countries. They help children and adults to learn about what inuences their
health, the impact of the choices they make and where to nd reliable information to
support decision-making. Learning may have benets in terms of improving attitudes
to and competencies for engaging in positive health behaviours and making best use
of health services. Literacy improves employment prospects (with associated health
gains), either by helping individuals to move out of unemployment or through
aiding progression in the labour market. Adult participation in learning may also be
benecial for the next generation in terms of improving their chances of learning and
health outcomes. The development of such literacy skills should be a priority and
included in all school and adult education programmes, with particular emphasis on
parental involvement in early years education.
Media marketplaces — For many people, media marketplaces are a main source
of health information. These marketplaces shape people’s health perceptions,
behaviours and choices. Commercial and political interests often dominate, with
interested parties using sophisticated communication techniques to sell their
products and ideas. Public health advocates need to learn from commercial
advertisers and marketers. They can use the same approaches to help people make
healthier decisions when choosing goods and services. This could also serve to
counteract the negative inuences of industries—tobacco, alcohol and fast food
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companies—which glamorise and promote unhealthy products and lifestyles.
Home and community settings — People are called upon to make daily
health-related decisions in their homes and communities. Families, peer groups
and communities can be primary sources of health information. They help to shape
functional health literacy skills related to product and service choices. These sources
can provide important information about health-promoting, health-protecting and
disease-preventing behaviours, as well as ‘alternative therapies’, self- and family care,
available support services and rst aid.
Workplace settings — By providing clear and consistent health messages to
employees, employers can help prevent accidents and lower the risk of industrial
or occupational diseases. Health-promoting work environments go further with
specic health and wellbeing policies and dedicated support for employees to
address lifestyle choices, such as alcohol and drug use and stress factors, including
job security, demand–control, eort–reward in the workplace and issues related to
achieving an appropriate work–life balance.
Policy making arenas — Policies at all levels—institutional, community, national
and regional—shape the social and structural factors which determine health literacy
and health. The engagement of citizens in policy making processes is a fundamental
democratic principle. A key trend in many health system reforms is the empowerment
of patients, the development of patient-centred care, and eorts to address the social
determinants of health which shape dierential access to information and care across
a social gradient.
BUILDING INDIVIDUAL SKILLS
Building health literacy skills and abilities is a lifelong process, and no-one is ever
totally health literate (or illiterate
1
). People develop their health literacy over time
and from a wide variety of sources. These may include their family and work settings;
1
This guide intentionally avoids use of the term ‘health illiteracy’, as it is both inaccurate and an
emotionally loaded term which all too often causes stigma and shame.
Skills and Abilities
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primary, secondary, higher and adult education; health providers; print and on-line
health information; the media; and a wide variety of community-based resources,
such as support groups to assist in quitting smoking.
Health literacy skills (see Box 2) include basic reading, writing, numeracy and
the ability to communicate and question. Health literacy also requires functional
abilities to recognise risk, sort through conicting information, take health-related
decisions, navigate often complex health systems and ‘speak up’ for change when
health systems, community and governmental policies and structures do not serve
needs.
BOX 2 : HEALTH LITERACYFOUR INDIVIDUAL LEVEL SKILL SETS
Health literacy related skills can be categorised as: cognitive (knowledge),
behavioural (functional), advocatory (proactive) and existential (spiritual).
Cognitive skills include general literacy, numeracy, information gathering skills
and analysis. These skills are used for health-related actions like reading health
warnings and food labels, lling in forms, deciphering prescription drug instructions,
as well as the ability to understand written and oral information given by health care
professionals.
Behavioural skills include more interactive literacy and social skills used to
make health risk assessment and lifestyle choices; system ‘navigation’ (nding
the way to services or negotiating complex systems); self-care; and interpersonal
communication and negotiating (e.g., asking for and receiving information, ling
complaints or understanding health care charges, costs and bills).
Advocacy skills include critical competencies to analyse health information,
understand the political and economic dimensions of health, and take action to
express opinions and make changes at institutional, community and political levels.
This may include ‘speaking up’ for oneself and others, taking action to promote new
or change existing policies, lobbying and organising campaigns.
Existential skills include the ability to make sense of a life with illness, live with
uncertainty, and avoid descending into depression, self-pity, hopelessness or
helplessness. It includes the ability to grieve and to prepare for and die in a peaceful
way.
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Health literacy is best viewed as a dynamic continuum of skills. People’s needs
change over time as they face dierent health challenges. Some of these changes are
predictable based on life stages or whether preventive, disease care or rehabilitative
information is being sought. The need for other skills arises when new behaviours
are required: for example, to respond to the emergence of new health threats like
pandemic inuenza, climate change related heat waves and oods. But no one is
ever totally health literate. Everyone at some point needs help in understanding or
acting upon important health information. Even highly educated individuals may
nd systems too complicated to understand, especially when made more vulnerable
by poor health.
Times of illness often provide ‘teachable’ moments and opportunities to enhance
health literacy skills and knowledge.
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SECTION 2: WHY IS HEALTH LITERACY IMPORTANT?
1. POOR HEALTH LITERACY SKILLS ARE VERY COMMON
In the United Kingdom, United States, Australia and Canada surveys have shown
poor health literacy skills in 20-50% of the population. A National Consumer Council
survey in the United Kingdom (NCC 2004) found that one in ve people had problems
with the basic skills needed to understand simple information that could lead to
better health. US studies estimate that 90 million adults—almost half of the adult
population—may lack the literacy skills needed to eectively use the health system.
The majority of these adults are native-born English speakers. Literacy levels were
found to be lower among the elderly, those who have lower educational levels, those
who are poor, minority populations and groups with limited English prociency, such
as recent immigrants (Kutner et al. 2006).
2. POOR LITERACY SKILLS AND LOWER EDUCATIONAL STATUS ARE
ASSOCIATED WITH POORER HEALTH AND WEALTH
Literacy—along with primary and secondary school attendance—is positively
correlated to personal income, economic growth, female empowerment, life
expectancy and having fewer children (Wils 2002). There is also a positive relationship
between education and income (Cassen 2002). A global study by Barro (1991)
showed that each percentage increase in primary school enrolment resulted in a
0.025 percent higher annual GDP growth rate in the subsequent 25 years. Household
surveys of developing countries consistently nd that those households headed by
illiterate or less educated individuals are more likely to be poor. Simple literacy may
not be sucient to completely erase the possibility that a household is poor, but it can
reduce the probability and the depth of the poverty experienced (Wils 2002).
Health education aects health outcomes in many ways. Enhancing a mother’s
educational level reduces infant and child mortality in developing countries (Ratzan
2001). The number of years spent in formal education have been found to be inversely
related to age-adjusted mortality in many countries, such as Norway, England and
Hungary (Ratzan et al. 2000). A review of the health impacts of education found low
educational level was associated with an increased risk of death from lung cancer,
stroke, cardiovascular disease and infectious diseases, as well as a number of illnesses
including back pain, depression, dementia, asthma and diabetes. Even in countries
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where the average life expectancy for all has increased, the gap between those with
the highest and lowest levels of education has remained (Higgins et al. 2008).
Clear links between education level and health behaviours have been shown.
The likelihood of becoming a smoker is increased among less educated populations.
Those educated to Level 2 or below are 75 per cent more likely to be a smoker at age
30 than a similar individual educated to degree level or higher (Wilberforce 2005).
Higher educational levels are related to decreases in smoking prevalence and higher
rates of smoking cessation in Europe (Cavelaars et al. 2000). Having a higher level of
education is associated with consuming more fruit, vegetables and bre and less fat
(Johansson et al. 1999; Fraser et al. 2000 cited in Higgins et al. 2008). And higher
educational level has been related to more ideal body weight in Europe, Russia and
China (Molarius et al. 2000).
©

P
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o
t
o

b
y

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r
a

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a
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Health systems may be very advanced or very basic in their resources. Consider the impact of
limited health literacy for those in rural areas.
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3. POOR HEALTH LITERACY IS ASSOCIATED WITH MANY ADVERSE HEALTH
OUTCOMES
2
Health literacy has been directly linked with acquisition of health knowledge, health
behaviours and compliance with medication and self-care regimens (Baker 1999;
DeWalt et al. 2004; IOM 2004). Empirical data supports an association between
limited health literacy and numerous adverse health outcomes (see Box 3).
BOX 3 : HEALTH OUTCOMES OF WEAK HEALTH LITERACY
• Poorer health choices
• Riskier behaviours
• Less use of preventive services
• More delayed diagnoses
• Poorer understanding of medical conditions
• Less adherence to medical instructions
• Poorer self-management skills
• Increased risk of hospitalization
• Poorer physical and mental health
• Increased mortality risk
• Greater health care costs
• Higher health costs
Less health knowledge. People with limited health literacy have less health
knowledge, access fewer preventive services and have poorer self-management skills
(Williams et al. 1998a, 1998b). A person with low health literacy is likely, for example,
to have poor knowledge about a wide variety of chronic health conditions, including
asthma, hypertension, diabetes and congestive heart disease.
Worse self-management skills. People with low health literacy skills
demonstrate poorer self-management skills. This has been studied in asthma,
HIV infection and diabetic patients (Williams et al. 1998a,1998b; Wolf et al. 2005;
2
This section is adapted from Health Literacy: A Brief Introduction by Stacy Cooper Bailey, MPH; Michael S.
Wolf, PhD MPH; Kara L. Jacobson, MPH CHES; Ruth M. Parker, MD; Scott Ratzan, MD MPH (ICN 2009).
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21
Kalichman et al. 1999; Wolf et al. 2006b; Schillinger et al. 2002). These studies
showed that patients with lower health literacy skills were less able to identify
medications, demonstrate proper administration techniques and showed poorer
adherence to medication. In the case of people with diabetes, patients were less
likely to know the appropriate dosing instructions and dietary restrictions, less able
to achieve tight blood sugar control and reported higher rates of retinopathy as the
result of poor self-care. HIV-infected patients with limited literacy skills have been
found to demonstrate less control of their infection and were less likely to have an
undetectable viral load.
Higher hospitalisation rates. Patients with limited health literacy have
higher hospitalisation rates and a greater number of emergency room visits (Mancuso
& Rincon 2006; Baker et al. 2002).
Poorer health. People with low health literacy have been found to be
twice as likely to self-report poor health, even after adjusting for age, gender, race
and markers of economic deprivation (Baker et al. 1998). Health literacy has been
found to be a signicant, independent predictor of average blood sugar in people
with diabetes (measured by serum haemoglobin A1c) (Schillinger et al.

2002). People
with low health literacy had a higher prevalence of diabetes and congestive heart
failure, reported worse physical and mental health and greater diculties with daily
activities and limitations due to physical health (Wolf et al. 2005).
Higher mortality. Sudore and colleagues (2006) reported that in elderly
people, low health literacy was associated with greater all-cause mortality risk
compared to those with adequate health literacy.

Similarly, Baker et al. (2007) found
low health literacy to be signicantly and independently associated with higher
mortality risk in elderly people (see Graph 1).


4. HIGHER HEALTH CARE COSTS
Health literacy has a strong economic component. A low level of health literacy can
lead to inappropriate use of the healthcare system, reduce eectiveness and eciency
of health care interventions or increase the likelihood of unhealthy lifestyles. One
analysis in the US, by the National Academy on Aging Society, estimates that low
health literacy costs the US health care system $30-$73 billion annually (1998
dollars). Sixty-three percent of the additional costs attributed to low health literacy
may be borne by public programmes (Friedland 1998).
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Graph 1: Literacy and Mortality Risk (Baker et al. 2007)
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0
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0
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9
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A
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e
0 20 40 60 80
Months
Adequate
Marginal
Ìnadequate
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SECTION 3: HOW IS HEALTH LITERACY MEASURED?
Most health literacy measures in current use tend to assess reading skills
(word recognition or reading comprehension) and numeracy rather than
measure the full range of skills needed for health literacy. Although this is
an area of active research, current assessment tools are still weak. There is a
need to develop tools that can measure the ability to use health information
to attain and maintain good health, including oral understanding, health
knowledge and navigation skills (i.e., whether individuals are competent to
access services, handle transitions, and find relevant information). Secondly,
measures are needed to be able to assess the health literacy friendliness of
systems and settings as both a guide to quality improvement and as a way to
hold agencies responsible for making health information understandable and
actionable (Clancy in Hernandez 2009, p.9).
The 2009 Institute of Medicine Roundtable on Health Literacy Measurement looked at
measures of population health literacy, through geo-mapping and other techniques,
to determine areas where interventions may be appropriately targeted (Hernandez
2009). The Roundtable pointed to a variety of tools in the pipeline which may help
enhance capacities in this area in the near future (see Box 4). The report can be
downloaded from http://www.nap.edu/catalog.php?record_id=12690.
BOX 4 : MEASUREMENT TOOLS IN DEVELOPMENTPATIENT ASSESSMENT
The Consumer Assessment of Healthcare Providers and Systems (CAHPS) is a set of
standardized, evidence-based surveys (in the US) for assessing patient experiences
with their health care encounters. The CAHPS project not only develops survey
instruments, but also provides reports that consumers can use to make decisions
about their choices in health care. The project has also started to develop provider
reports that can be used by providers to identify areas for quality improvement.
A tool is being developed that will be used to measure patients’ perspectives
on how well health care professionals communicate health information. The goal is
to gather data to help health providers improve communication skills and patients’
health literacy. It will include measures on:
• Oral communication regarding health problems and concerns, medications,
tests, health promotion and forms;
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• Written communication regarding medications and tests;
• Techniques utilized by health providers to ensure patient comprehension of
health information (commonly referred to as “teach back methods”); and
• Patient-provider relationship.
The plan is to eld test the item set in the fall or winter of 2009 with an
expected release date of spring 2010 (Ocampo B, in Hernandez 2009, p.81).
3.1 CURRENT MEASUREMENT TOOLSINDIVIDUAL SKILLS AND
ABILITIES
REALM
The Rapid Estimate of Adult Literacy in Medicine (REALM) is a word recognition
test. Patients are asked to read a list of 66 increasingly dicult medical terms. The
number of correctly pronounced words is subsequently related to approximate grade
levels of reading (0-18: third grade and below; 19-44: fourth to sixth grade; 45-60:
seventh and eighth grade; 61-66: ninth grade and above). REALM is simple, brief
(administered in two to three minutes) and useful for proling patients’ reading
skills (see http://www.ihs.gov/nonmedicalprogrammes/healthed/PDF/PtEd_REALM_
Examiner_WordList.PDF).
TOFHLA and S-TOFHLA
Comprehension tests—such as the Test of Functional Health Literacy in Adults
(TOFHLA) and the Short Test of Functional Health Literacy in Adults (S-TOFHLA)—
were designed to provide a broader assessment of functional health literacy. They
take into account reading comprehension and quantitative literacy (numeracy).
TOFHLA uses three passages of prose to assess reading comprehension. These
are: (1) instructions for the preparation for an upper gastrointestinal tract x-ray, (2)
the patient rights and responsibilities section of a selected application form, and
(3) a standard hospital consent form. Each of these passages has about every fth
word eliminated and the respondent is asked to choose the most appropriate word to
complete the sentence.
S-TOFHLA uses only the rst two passages. For both the TOFHLA and the
S-TOFHLA, hospital forms and prescription bottles are also used to assess a patient’s
numeracy skills, such as instructions for taking medication, appointment schedules,

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blood pressure and glucose monitoring, and obtaining nancial assistance for both
of these tests.
The number and type of quantitative tasks vary according to the version of
the TOFHLA used. TOFHLA and S-TOFHLA have been shown to be reliable and valid
measures of functional health literacy. Although TOFHLA and S-TOFHLA are the
primary instruments by which reading comprehension and numeracy skills are
measured, the time—22 minutes for the TOFHLA and 12 minutes for the S-TOFHLA—
and complexity have limited their use to research within health care environments.
NVS
The Newest Vital Sign (NVS) test is a health literacy screening tool administered in
three minutes. It requires users to read a standard nutrition label from a carton of ice
cream and answer a series of six questions. The concept implies that health literacy is
a vital sign, just as heart rate and blood pressure are. As with the TOFHLA, there are
English and Spanish versions of the NVS. Currently, there is limited experience with
the NVS in the published literature.
One-Item Screening Measures
While researchers may choose to use one of the above tools, it may be necessary
for practitioners in a busy health care environment to simplify the measurement of
health literacy. Because of the shame associated with limited health literacy, eorts
have been made to identify simple screening questions that avoid the perception of
literacy testing.
One study evaluated a series of questions as potential predictors of health
literacy as measured by the S-TOFHLA. Three questions emerged from the analysis as
best single-item screening measures:
• How often do you have problems learning about your medical condition because
of diculty understanding written information?
• How condent are you lling out medical forms by yourself?
• How often do you have someone help you read hospital materials?
In a follow-up study of the three questions, “How condent are you lling
out medical forms by yourself?” was identied as the best predictor of limited
health literacy skills when validated against REALM. Using a one-item screening
question during individual encounters is simple, less intrusive, and may be a practical
alternative to more complex measures.
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3.2 MEASURING THE DEMAND AND COMPLEXITY SIDEHEALTH
LITERACY INTERVENTIONS
Some researchers have begun developing tools to evaluate the health literacy
friendliness of systems. One such tool is shown in Table 1 (Matthews & Sewell
2002). The evaluation tool is a 5-minute, 15-question, web-based survey. It collects
information on whether health literacy is considered in programme development and
service activities; the degree to which organisations follow health literacy principles
in their programmes; whether organisations pilot test materials for comprehension or
cultural competence; evaluation of materials; which activities people associate with
health literacy; and lessons learned.
System assessments
In addition to activity/intervention analysis, researchers have used assessment
tools to evaluate how well a health service meets the needs of patients with limited
health literacy skills. One study applied an assessment tool to a pharmacy setting.
It evaluated patient understanding of medications and adherence to prescribed
regimens (Jacobson 2008). Additionally, the assessment tools:
• Raise pharmacy sta awareness of health literacy issues.
• Detect barriers that may prevent people with limited literacy skills from
accessing, comprehending and using health information and services provided
by the organisation.
• Identify opportunities for
improvement.
Conducting an organisational
assessment may also provide
a baseline assessment prior to
implementing an intervention.
Jacobson identied nine key
elements of an organisational health
literacy intervention: management,
measurement, workforce, care
process, physical environment,
technology, paperwork and
This assessment tool can be accessed at:
http://www.ahrq.gov/qual/pharmlit/.
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written communications, culture, and alignment. Evaluating these elements
provides a comprehensive audit to assess congruence between patient, provider
and organisational perspectives of health literacy. A follow-up assessment allows
evaluation of the intervention’s impact on an organisation’s accessibility to those with
limited health literacy.
TABLE 1. FREQUENCY OF UNDERTAKING
HEALTH LITERACYRELATED ACTIVITIES
Regularly Sometimes Do not do
Don’t
know
No
response
Simplify language and check
readability
Reformat materials to make
them more user-friendly
Conrm patient/client
understanding
Train agency, sta, or health-
care providers about health
literacy
Use audiovisual aids
Provide materials in multiple
languages
Use pictographs, cartoons, etc.
to instruct and inform
Test for reading levels in
clients
Use interactive computer or
kiosk
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3.3 SCORECARDS
The WHCA Action Guide Group has proposed the development of health literacy
scorecards for individual and system monitoring of literacy. The individual scorecard
would identify a few key health indicators that are associated with a healthy
physical and mental state. These might be modelled on the D5 Diabetes Control
Scorecard used to assess diabetes control in the US and other countries (see Box 5).
A health literacy score might include a mix of physical, mental and social wellbeing
measurements, including a literacy score (from one of the above measures); blood
sugar; blood pressure; body mass index; cholesterol; tobacco use; immunisation
status; exercise measure; wellness self appraisal; sense of social control, etc.
Alternatively, the scorecard might measure knowledge of key facts needed to live a
healthy life. Individuals could rate themselves against a standard and agencies would
be measured on how many of their users successfully achieved the score parameters.
BOX 5 : THE D5 DIABETES CONTROL SCORECARD
The D5 represents the ve goals needed to reduce a patient’s risk of heart attack or
stroke when he/she has diabetes.
A patient achieves the D5 when all ve goals are met:
1. Blood pressure is less than 130/80
2. Bad cholesterol, LDL, is less than 100
3. Blood sugar, A1c, is less than 7%
4. The patient is tobacco-free
5. The patient takes a daily aspirin (age 40 and older)
Clinics are then given a D5 score by a designated agency based on the
percentage of their patients achieving the D5.
Ref: http://www.thed5.org/index.php?p=view_clinics
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3.4 A MEASURE OF HEALTH DEVELOPMENT
Ratzan (2001) and others have proposed that population health literacy should
be considered a measure of health development. A population health literacy
index which measures a person’s skills and the health literacy friendliness of key
systems and settings could provide a useful and unique picture of population

health competence. Such an index could provide a new type of health index for
societies

that complements measures such as the disability adjusted life

years
(DALYs) and morbidity and mortality data (Ratzan 2001; Kickbusch 2002). The IOM
Roundtable 2009 heard several presentations of approaches to population health
literacy measurement, including geo-mapping using census data and literacy
measures (Lurie in Hernandez 2009, p.66) and another imputing health literacy
based on patient sociodemographic indicators such as age, education, etc. (Hanchate
in Hernandez 2009, p.61). This is an area for future research.
Social Capital
Links have also been made between health literacy and the concept of social capital.
Social capital refers to the

features of social organisation—such as networks, norms
and

social trust—that enable participants to act together more eectively in
pursuing shared objectives (Putnam 2000; Coleman 1988). A health literacy index
may also serve as a measure of social capital as regards health.
WATCH THIS SPACE
The European Health Literacy Survey +/6Ɣ(8 is a project which will measure
health literacy in various European regions and cultures and create awareness of its
societal and political impact in Europe. First results are expected at the end of 2010.
The +/6Ɣ(8is the rst international survey of health literacy, yielding datasets for
European and national valorization as well as in-depth international analyses.
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SECTION 4: WHAT CAN INDIVIDUALS, AGENCIES AND SYSTEMS DO TO
STRENGTHEN HEALTH LITERACY?
Health literacy is a society-wide responsibility—it is everybody’s business.
Useful interventions can be taken in the six domains of activity identified
earlier. While health literacy is indeed the product of many societal actors,
health care and public health workers have a special responsibility in this area
both to enhance their own communication capacities and those of the systems
in which they work, as well as facilitating the change and development
needed in other sectors and settings.
A NOTE OF CAUTION
While much can be learned from the activities of others, this guide is not promoting the
wholesale adoption of any intervention. It is important that any denition of health
literacy recognises the potential eect of cultural dierences on the communication
and understanding of health information (Nutbeam 2000). Native language,
socioeconomic status, gender, race and ethnicity, along with mass culture—news
publishing, advertising, marketing, and the plethora of health information sources
available through electronic channels—all inuence health literacy.
4.1 HEALTH SYSTEMS
Complexity of health systems
Advances in medical science, changes in the delivery of care and the adoption of a
business approach to health reform in many countries
3
have resulted in less accessible
and more complex health systems. These changes all make high health literacy
demands on their users. Navigating such health care systems, with their numerous
layers of bureaucracy, procedures and processes, can be a challenging task. People
often have to choose a provider, make a decision about treatment depending upon
the severity of illness, and assess the ease and quality of various treatment options.
3
The adoption of a business approach to health reform, guided by eciency outcome measures, has
often led to a re-orientation of priorities. Economic values inherent in an industrial and/or for-prot
approach have in many places replaced fundamental commitment to access and care for many
vulnerable persons, e.g. the poor, elderly and unemployed. Time management of health professional
visits, for example, reduces the amount of contact time and opportunities for information exchange
between providers (especially doctors) and patients.
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They also have to move from community settings to hospitals, and from public to
private providers (IOM 2004). An adult’s ability or inability to make these decisions
and navigate these systems is a reection of systemic complexity as well as individual
skill levels. Patients, clients and their family members are often unfamiliar with
these systems. Their health literacy can be thought of as the currency needed to
negotiate the system (Selden et al. 2000); or a compass for what may be a dicult
and unpredictable journey (Kickbusch & Maag 2008).
Health Literacy enhancement interventions
Health system interventions to improve individual and population health literacy can
be divided into four categories:
1. Provision of simplied/more attractive written materials
2. Technology-based communication techniques
3. Navigating health systems
4. Training of educators and providers
4.1.1 Provision of simplified/more attractive written materials
4
Health information materials and ocial documents—including informed consent
forms, social services forms and public health and medical instructions—often use
jargon and technical language that make them dicult to use (Rudd et al. 2000,
cited in IOM 2004). Moreover, studies suggest that health information is often more
dicult to comprehend than other types of information (Root & Stableford 1999).
Most of the approaches in this category involve producing patient information
materials that are written with simplied language, have improved format (for
example, more white space and friendlier layout), or use pictograms or other
graphics. Table 2 describes some key techniques (Doak, Doak & Root 1996).
4
This section is adapted from Health Literacy: A Brief Introduction by Stacy Cooper Bailey, MPH; Michael S.
Wolf, PhD MPH; Kara L. Jacobson, MPH CHES; Ruth M. Parker, MD; Scott Ratzan, MD MPH (ICN 2009).
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TABLE 2. TECHNIQUES TO SIMPLIFY PRINT MATERIALS
Technique Explanation
Write in short
sentences
Short sentences tend to be easier to read and understand for
patients. Sentence length should be less than 15 words, and
ideally less than 10 words. Sentences should be written in a
conversational style.
Print in large, Sans-
Serif font
Text should be written in Sans-Serif font (e.g. Arial) with a
minimum font size of 12 pt. Use of all capital letters should
be avoided; only the rst letter of words in text should be
capitalized.
Include sucient white
space
Large margins and adequate spacing between sentences and
paragraphs will provide sucient white space and prevent
a document from appearing to be solid text. In general, text
should be left-justied for easy reading.
Select simple words Words that are commonly used in conversation are the best to
include in health messages. Shorter words tend to be easier to
understand and more familiar to patients.
Provide information in
bulleted lists
Bullets help to separate information from the rest of the text.
Information provided in lists is often easier and faster for
patients to read and comprehend.
Highlight or underline
key information
Bolding and highlighting phrases or words can draw attention
to essential information for patients. It should be used sparingly
to dierentiate key sentences or phrases from the rest of the
text.
Design passages to
be action and goal
oriented
Written passages should be action and goal-oriented, and
should provide readers with a clear explanation of the purpose
of the written material. Passages should clearly dene what
actions should be taken by the reader and why these actions
are necessary.
Group and limit
instructional content
Consider grouping information under common headings to
promote understanding. Place key information at the beginning
of a paragraph and be sure to limit the amount of instructional
content that is given to what is essential for the patient to know
and understand.
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Use active voice Information written using active voice is easier to understand
and more likely to motivate the patient to action.
Avoid unnecessary
jargon
Unnecessary jargon can be distracting to patients and often
provides little information. Medical terminology should be used
as infrequently as possible and, if used, should always be clearly
dened and explained to the patient.
Studies have shown that the majority of patients prefer to have print materials
provided in clear and concise formats like those described above. All print materials
should be simplied regardless of literacy level of target group.
Utilising visual aids. It is helpful to use visual aids in print material and
during clinical encounters to help patients remember and process health information.
One study demonstrated that people who listened to medical instructions
accompanied by a pictograph remembered 85% of what they heard in contrast to
14% for patients who did not receive a visual aid (Houts et al. 2001). Visual materials
are useful to teach patients about health conditions that cannot be seen easily—
for example, cholesterol in the blood vessels—and to demonstrate how to follow
steps to complete a task. Visual materials should be tailored to reect the culture, age
and background of the patient population and should be simple, recognisable and
clear. Photographs and visual materials depicting how to correctly engage in health
activities are useful methods of transferring health information to patients.
4.1.2 Technology-based communication techniques
The internet, mobile phones and other telecommunication advances allow for
instant local–global linkages and cost-eective information transfer and intelligence
gathering. These technologies facilitate health literacy by providing people with a
choice of information that can be accessed in their own time and allowing them to
put their own information on the web. However, the current digital divide is more
dramatic than any other inequity in health or income. Access to internet and mobile
phone technologies reects social and economic dierences between and within
countries. High income countries—which have 16% of the global population and
7% of the global burden of disease—have 94% of internet hosts. Low-income
countries, with 84% of the population and 93% of the burden of disease, have only
6% of internet hosts (Dzenowagis 2004).
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Interventions
A wide variety of initiatives have tried to enhance access to technologies and address
the digital divide. These initiatives include the introduction of low-cost hardware; the
creation of ‘staging posts’ where local intermediaries interpret information for others;
language-specic mirror sites (where web pages are regularly translated into local
languages); and training programmes for users. Such technologies not only address
information access issues for users but can be useful to institutions and governments
as an interactive way of gathering feedback on the friendliness of services and
information access.
One widely-used type of technology-based communication technique is
telephone-delivered interventions (TDIs), in which counselling and health reminders
are delivered using the telephone or through text messaging. TDIs can vary by the
type of service provider and the extent to which the call is scripted. They may also
vary depending on characteristics and responses of the individual, and the extent to
which subsequent calls take into account information from other encounters with the
individual (IOM 2002).
A systematic review of technology-based communication techniques shows
that such decision aids improve knowledge, reduce decisional conict and stimulate
patients to be more active in decision-making without increasing anxiety (O’Connor
et al. 1999).
New communication technologies oer educational opportunities that
help people to be more involved in their health decisions and treatment. These
technologies include web-based learning, audio-visual aids (for example videos,
DVDs, spoken word), interactive games and ‘mobile health’ (M-health). ‘Mobile
health’ is working on capturing the power of SMS messaging to support literacy. One
example of this is in India. ‘Baby Centre’ is a service programme to which mothers
can SMS their due dates to a central information centre. They will then receive, on a
regular basis, text messages with useful information and reminders about prenatal
check-ups, scans, etc. For those with poor literacy, call-in services are provided (Stross
& Ratzan 2009, pers. comm.).
On the provider side, computerised proles of individual patients or target
populations can be used to tailor existing materials to t specic situations. This can
be done using computer-based algorithms that take various patient characteristics
into account. These characteristics might include language, age, gender, ethnicity,

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reading ability, health literacy level, and the needs and goals of the patient at that
time (Revere & Dunbar 2001).
4.1.3 Navigating health systems
Many health systems, particularly at institutional and community level, have tried
to make their services more easily navigable by using case managers and navigators
to help patients. Navigators can be community health workers, lay or professional,
paid or volunteers, but their role is to help patients through the health or social care
system. They can be trained to provide health education, interpret health information
and assist in obtaining access to services.
Navigators have been shown to help alleviate nancial, communication and
medical system barriers. They help patients to overcome fear and emotional barriers
by providing support. The navigator can act as the patient’s advocate in the interval
between screening and further diagnosis or treatment, assisting with practical issues
such as paperwork for nancial support, childcare or transportation problems. They
may also translate medical jargon into understandable language, provide education
about the disease and its treatment, help the patient to communicate with their
doctor and be available to listen to fears and concerns. Such services have been found
to improve health outcomes, increase adherence to medical treatment, reduce missed
appointments and lower health system costs (Freeman et al. 1995).
4.1.4 Training of educators and providers
Providers should be trained to communicate more eectively to help them care for
patients with limited health literacy. Training should focus on improving clinician
communication skills and understanding of cultural sensitivities (Frankel & Stein
2001). Furthermore, the need for improved clinician skills in fostering mutual
learning, partnership-building, collaborative goal-setting and behaviour change for
chronic disease patients has been identied (Youmans & Schillinger 2003). Training
works best when it is informed by users with limited health literacy, who are often
under-represented in clinical research (IOM 2004).
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BOX 6 : CASE VIGNETTE
CHRONIC DISEASE MANAGEMENT PROGRAMME IOM 2004
Researchers and practitioners at the University of North Carolina in USA have
developed several chronic disease management programmes that are designed
to identify and overcome literacy-related barriers to care. The programmes, which
include interventions for diabetes, heart failure, chronic pain and anticoagulation,
are led by clinical pharmacist practitioners and trained health educators, who
use evidence-based algorithms, a computerised patient registry and literacy-
independent teaching techniques to facilitate eective self-care and assure receipt of
eective services and medications. The teaching techniques are used in a one-on-one
interaction with the patient during clinic visits and feature:
• A teach-back method in which the patient teaches the content back to the
educator
• Practical skills rather than complex physiology
• Written educational materials designed for low-literacy users that the educator
reviews with the patient
• Follow-up telephone calls and quick visits by the educator when the patient
returns to the clinic, that serve to reinforce the education
• A collaborative learning environment based on sensitivity to the role of literacy
in communication with patients
In each area, the programme organisers have systematically measured literacy
as well as relevant health outcomes. For diabetes and anticoagulation, completed
studies have found that these programmes can oset the adverse eects of low
literacy.
A typical training programme might introduce providers to the concept of
limited health literacy in patient populations, pointing out the implications for the
delivery of healthcare services. It might provide techniques to improve communication
with patients who have limited health literacy skills. Programmes may also include
direct instruction and role-play exercises, in which the provider practises counselling
the patient (in this case the trainer) with an observer providing feedback (Jacobson
2008).
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Improving Verbal Communication. It may not always be possible to
identify patients with limited health literacy. Health professionals should use plain
language with all patients and avoid the use of medical jargon (Paasche-Orlow et
al. 2006). When this is not possible, terms and concepts should be claried when
they arise. Techniques for eective verbal communication are shown in Table 3 below
(Paasche-Orlow et al. 2006).
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A dietician is shown using visual aids. Visual aids can increase verbal
communication eectiveness.
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TABLE 3. EFFECTIVE VERBAL COMMUNICATION TECHNIQUES
Communication
Technique
Explanation
Talk slowly Slow down the pace of speech when talking with a patient.
Encourage questions An eective way to solicit questions would be to ask “What
questions do you have?” This is an open-ended question
and allows the patient more room for possible interactive
communication with their provider. Questions such as “Do you
understand?”, “Do you have questions?”, and “Do you think you
can (check your blood sugars now)?” are vague and give the
patient the opportunity to avoid the question with a simple “no”
answer.
Explain things in clear,
plain language
Plain, non-medical language should be used. New terms should
be dened. Words or expressions that are familiar to patients
should be used, such as “pain-killer” instead of “analgesic”.
Jargon, statistics, and technical phrases should be avoided.
Avoid complex
numerical concepts
and statistics
Many people do not understand percentages. Patients do not
understand all the numbers given to them before they make any
treatment decision. Instead of saying, “There is a 20% chance
that you will experience X outcome,” you can tell the patient “20
out of 100 people will experience X outcome.”
Use analogies and
metaphors
Analogies should be selected to relate complex concepts to
things the patient already knows (e.g., “Arthritis is like a creaky
hinge on a door.”).
Limit information
provided
Limit information to 1-3 key messages per visit. Reviewing and
repeating each point helps reinforce the messages. In addition, it
is important that other sta should reinforce the key messages.
Verify patient
understanding
A “teach-back” or “show me” method should be used to allow
the patient to demonstrate understanding and for the health
professional to verify patient understanding.
Avoid vague terms Say “Take 1 hour before you eat breakfast” instead of “Take on an
empty stomach.”

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Health providers should also verify that information provided verbally has been
eectively understood by the patient by integrating the ‘teach-back’ technique into
clinical encounters with patients. After describing a diagnosis and/or recommending
a course of treatment, the health professional should ask the patient to reiterate
what has been discussed by reviewing the core elements of the encounter so far. The
health professional should be specic about what the patient should teach back and
be sure to limit instruction to one or two main points. If a patient provides incorrect
information, the health professional should review the health information again
and give the patient another opportunity to demonstrate understanding. Using this
method, the health professional can gain assurance that the patient has adequately
understood the health information presented. Graph 2 shows how the teach-back
technique should be conducted (Bailey et al. 2008).
Graph 2: The teach-back method
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CASE STUDIES : HEALTH SYSTEMS INTERVENTIONS
1. MEETING THE HEALTH CARE NEEDS OF CALIFORNIA’S CHILDREN:
THE ROLE OF TELEMEDICINE
Background
Digital Opportunity for Youth Issue Brief, Number 3, describes how telemedicine—the
application of information and communication technology (ICT) to provide health
care services at a distance—is used to improve the health of children living in the
state of California, within the United States, especially those who are low-income
or living in medically underserved areas. It also outlines challenges to successful
adoption of telemedicine and provides concrete recommendations for action.
Links to health literacy
Telemedicine opens up the health system and creates many new communication
options. It can connect providers with clinics and hospitals, schools, a child’s home,
a child care centre or juvenile detention centre. It can occur in real time, with
simultaneous interaction such as videoconferencing, or ‘store and forward’ transfers of
data for review and consultation at a later time. It can potentially enhance the health
literacy friendliness of dierent settings, by making information more accessible.
Lessons learnt
The authors state that telecentres can improve care and information exchange
through:
screening, diagnosing, treating and monitoring a wide range of paediatric health
conditions;
2. treating children in hospitals, especially critically ill children in rural settings;
3. providing dental screenings, treatment and referrals;
4. screening children for early detection and treatment of vision problems;
5. meeting mental health care needs;
6. helping sustain a 24-hour pharmaceutical presence;
7. providing coordination of services for special health care needs, such as autism,
genetic diseases, mental retardation, depression, anxiety and behavioural
problems;
8. improving the lives of families of chronically ill children by allowing them to keep
their children at home;
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9. protecting children by conducting child abuse consultations and examinations at
a distance;
10. bringing interactive learning tools to parents in their home communities;
11. helping families stay connected when a child has to be hospitalised;
12. managing chronic health conditions;
13. facilitating language translation by bringing translators to the exam room in a
short amount of time without needing the translator to be physically present;
14. providing conferences and training without extensive travel for rural health
providers; and
15. expanding the capacity of schools and child care centres to address the health
care needs of children through connecting school nurses with physicians.
Further Information
There are many challenges to further adoption of telemedicine, including, unclear
administration and contractual organisation, legal barriers, provider shortages in
subspecialties, and the need for more research demonstrating telemedicine’s impact
upon health literacy.
See http://www.comminit.com/en/node/265778/303 for more information.
Telemedicine can link rural health centres to urban resource centres and improve care and
information exchange.
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2. NEW ZEALAND ORGANIZATION FOR RARE DISORDERS NZORD
WEBSITE RESOURCES
The NZORD website resource was set up to ensure that good quality resources exist
online for patients and families aected by rare disorders in New Zealand. The
website provides information on rare diseases, a beginner’s guide and oers guidance
to navigating the health system in New Zealand. The website also includes a directory
of health and disability support groups, and commentary on policy and consultations.
The website was designed to enhance the health literacy of its users by tackling
the absence of centrally provided and maintained information about rare diseases (in
contrast to the huge amounts of information available for most common conditions).
This is achieved through links to a variety of quality databases with information on
rare disorders and other resources. To support the use of this information, which is
often designed for health professionals and researchers, the site oers guidance on
the contents of the databases and how best to navigate and use them.
The website also has an area called “Health & Disability Resources” which
contains information on:
 Specialist health services: This area of the website provides information about
how specialist health services are controlled, how the process of referrals works
and some descriptions of the specialist services to which someone might be
referred to help empower patients actively seeking care by demystifying the
process.
 Coping with your condition: This area contains links to practical assistance a
patient or family may need. This includes links to support networks, training
opportunities, counselling, specialist libraries, medicines information, research,
income support and needs assessment and service co-ordination agencies.
 Participating in your community: This area provides the details of organizations
that oer equipment, housing, transport, educational and vocational assistance
to help day-to-day activity and participation in the community.
The resources are aimed at patients and families primarily, but also clinicians
and researchers who might need to nd groups or connect with NZORD over policy
and service delivery issues.
Lessons learnt
A functional understanding of the healthcare system is a key element of health
literacy, both empowering patients through a sense of control and ensuring that
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care is sought at optimal times at the optimal point of the healthcare system. There
is scope to develop similar resources to those provided by NZORD on a country-by-
country basis. These , should , of course, reect the distinct system and service models
in each country. However, there is little value in trying to repeat centrally developed
information on diseases. There are very good resources out there that should be
linked to rather than repeated. In order to meet the needs of dierent communities,
translation of medical information from English to other languages will be necessary.
 It can be time consuming and requires a comprehensive knowledge of the
services available.
 The eectiveness of the resource is dependent on regular reviewing and updating
of the information.
For more information contact IAPO (www.patientsorganizations.org/contact).
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3. PELVIC PAIN NETWORK, DORSET ENDOMETRIOSIS PROJECT, UK
The Pelvic Pain Support Network is a patient-led organization that provides support
to and advocates on behalf of those with pelvic pain, their families and carers.
The Dorset Endometriosis Project was set up to ensure that patients receive the
information they need.
Links to health literacy
The project was initiated after patients reported poor experiences around the
quality and availability of information and access to care for their condition. The
project worked to enhance both individual provider and agency capacities to deliver
information. Focus groups were held to look into the specic information needs of
patients. Further research was conducted into the information that was available on
pelvic pain worldwide. This involved nding out what information sources patient
organizations worldwide had, bringing them together and conducting a patient
survey to see how useful they were for patients. The survey was evaluated and gaps
in the information and the quality of information available were identied.
Following this survey, a group of patients approached the clinical governance
manager at the local hospital about issues regarding patient care. A patient focus
group was organized to gather patients’ views. Funding was obtained for an
independent facilitator. A meeting of health professionals was convened and sub-
groups were established, one of which was patient information.
Lists of sources of information were produced by the Health Information
Centre. A basic leaet was produced for patients about Endometriosis that was to be
given to patients on diagnosis.
Lessons learnt
 Patients have a great deal of experience of the information needs in their disease
area.
 Information is key to empowering patients.
 It can be a long process to follow such a project through.
 It is useful to use a range of methods for gathering patients’ views—focus
groups, surveys, interviews, etc.
For more information contact IAPO (www.patientsorganizations.org/contact).
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4. PATIENT UNIVERSITY PROGRAMME CANCER PATIENTS, PERU
Since its creation in 2005, Esperantra, a patients’ organization, has been working to
improve the quality of life of cancer patients in Peru, through support and information.
In Peru, as in many other countries in the world, cancer is the second highest cause
of death. The dierence between Peru and many other countries is that more than 70
percent of all cancers in Peru are detected at a very late stage. There is an urgent need
for prevention campaigns. At the same time, up to half of all the people diagnosed
with cancer in Peru will not have access to treatment and care.
Esperantra found there was a critical lack of information for cancer patients
in Peru, who do not have access to information and are not aware of their rights and
responsibilities. They therefore conducted a study in the three main hospitals that
cancer patients attend to nd out how well informed patients were. The results
showed that 70 percent of all patients were not well informed, 85 percent of the
patients surveyed were not aware of their rights and responsibilities, and all the
patients and relatives that were surveyed were eager to receive more information.
This matched the experience of the organization, which is often contacted by patients
for more information and to complain about the lack of comprehensive explanations
from doctors, hospital sta and social services. Patients also say that they are often
overwhelmed by the obstacles they face when navigating the healthcare system and
feel they are left alone to their fate.
Some patients and relatives were willing to act, help others and learn more
about what they could do to change things. After working closely with cancer patients
for a signicant time and participating in the creation of patient organizations
and networks, Esperantra created a platform where these practices could be
professionalized into an integral training programme. This led to the foundation of
the Patient University Programme.
Links with health literacy
The Patient University Programme works to strengthen individual and group capacities
and skills of cancer patients. Through specialized courses and workshops covering
themes such as up-to-date information on cancer in general, innovative treatments
and care, rights and responsibilities of patients, leadership, strategic planning of
patient organizations, self advocacy and political action the patients are informed,
trained and empowered. By attending the Patient University, patients, survivors and
their relatives become protagonists, capable of advocating and defending equality of
access to quality treatment and medical services.
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The Patient University takes place in the conference room of Esperantra and
in other appropriate locations which are situated near the main hospitals. Not only
can the patients attend the workshops, training courses and lectures but they can
also attend the activities organized by the patient organizations that are part of the
Peruvian Patient Coalition. These activities are often organized in local communities,
locations reaching a specic public, hospitals and schools.
Results
In the pilot phase the Patient University had good results. The patients were eager
to learn more about cancer, to learn how to lead, organize and create patient
organizations, how to be a representative and teacher for other patients and
communicate their needs in a constructive way. The same empowered patients are
now participating actively and helping in the realization of the Patient University
Programme, other public awareness actions and involvement in health policy making.
Through the training, forums, lectures, and the information and support
provided, the patients and their families have been able to access global information
on cancer and on the newest technological advances. They have obtained tools to
face the situation and move forward. The many activities and support provided by
Esperantra and by the patients’ organizations have a positive inuence on the quality
of life and recovery process of the patients. The patients were able to be stronger self
advocates and able to make their own informed choices.
Lessons learnt
 Organizing the training and leadership programmes as a university gave the
patients more credit and recognition for their eorts and involvement.
 Empowered patients are eager to pass on their knowledge to others and are
capable of becoming important self advocates.
 It is often better to train relatively small groups of patients at a time with in-
depth trainings and workshops and continuous guidance.
 Some patients feel the need once they feel better to help others who are in the
same situation they were once in.
Conclusions
The Patient University model can be applied to many other contexts around the
world and be a great resource for patients faced with other diseases. In the context
of Peru there is a clear need among patients for training in skills such as leadership,
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self esteem, communication and many other basic skills, along with up-to-date
information and continuous organizational support which gives them the possibility
to create or participate actively in a patient organization or simply pass this knowledge
on to others.
In other contexts, the needs of the local population can inuence the focus of
the training and workshops. The members of the patients’ organizations that have
been created are strong actors in the Patient University Programme, putting their
skills into practice and sharing them with others.
For more information contact IAPO (www.patientsorganizations.org).
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5. CONCEBIR  FERTILITY CARE CAMPAIGN, ARGENTINA
The Fertility Care Campaign is being run by CONCEBIR, a patients’ organization in
Argentina. Through their work, CONCEBIR found that many people do not know
what factors can aect their fertility and therefore do not know how to look after
themselves and protect their fertility. They found that many people attending an
assisted reproduction medical centre nd out that their fertility has been signicantly
reduced because of their age, lifestyle or contraceptive method used.
In response, CONCEBIR carried out a survey in three Argentine cities. Out of
400 interviewees, 25 % could not name at least one factor that could aect human
fertility and only 6 % mentioned a woman’s age as one of the reasons for infertility.
Links with health literacy
CONCEBIR worked to address this by exploring ways to raise awareness of fertility care
among the population, providing information on ten factors that may aect fertility.
The objective was to make culturally-sensitive information more accessible that
could develop people’s knowledge and awareness so as to maximize their chances
of starting a family, at the time they choose, without needing assisted reproduction
technology.
Methodology
 A survey was carried out in Argentina to evaluate people’s knowledge about
fertility (2007)
 A poster was designed, summarizing the ten most important factors that aect
human fertility. This was done with the support of two important medical
associations in Argentina.
 An information brochure was produced outlining how the ten factors can aect
human fertility and how to protect it.
 The poster and the brochure were distributed and a public campaign through
the media was organized. The information was distributed in public hospitals,
primary medical centres and clinics in the city of Buenos Aires.
The initial target was all the population of reproductive age in Buenos Aires,
but the future target will be to reach secondary school pupils as part of sexual
education programmes and also run the same campaign in other cities of Argentina.
The immediate result was to create an interest in fertility and the possibility of
taking care of it. However, CONCEBIR is nding that, as in the case of any awareness or
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public education campaign, it is taking some time to embed these concepts into social
culture.
Lessons learnt
The most important lesson is to be patient because it takes a long time to achieve the
objective and to gather interest and consensus from other organizations in order to
work in a coordinated and more eective way, improving the results.
CONCEBIR found that it is not only important to include the patients’ point of
view, but also the opinions of doctors and other specialists.
For more information contact IAPO (www.patientsorganizations.org).
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6. AMERICAN CHRONIC PAIN ASSOCIATION GRAPHICAL COMMUNICATIONS
TOOLS, US
The American Chronic Pain Association (ACPA) has sought to oer tools that use
graphics to capture critical information and convey it quickly to enhance both initial
discussion and longer-term compliance.
The problem: ACPA receives many calls from consumers who believe that their
health care providers are not taking their pain seriously and that they are not getting
the care they need. In addition, many consumers call the ACPA oce with questions
about how to take medications and otherwise follow their providers’ instructions
following a visit.
Links to health literacy: This experience aligns with numerous studies that
highlight compliance issues among older adults, non-English speakers and others
with literacy challenges. Many “graphical tools” were developed to enhance patients’
care management skills.
The tools: American Chronic Pain Association Graphical Communications Tools
include:
 Pain Log
 Follow-up Sheet
 Care Card Pharmacy Insert (with the American Pharmacists Association)
 In Case of Emergency Sheet (with the American College of Emergency Physicians
(ACEP))
 Nerve Man diagnostic aid
Method: Before developing the tools, ACPA analysed the kinds of questions they
received from consumers and the issues raised by caregivers and identied the
problems in the health professional/consumer relationship. In the case of the
emergency department project, this involved a survey in partnership with ACEP. ACPA
then identied where the lack of understanding or process disconnects occurred.
Drafts of appropriate tools, including text and graphics, were developed
and tested with healthcare professionals on the ACPA board, the ACPA Professional
Advisory Committee and the partner organization, if any. Once consensus was
reached, materials were produced and posted on the web site and printed.
The materials are used in hospitals, clinics and by individuals independently.
Target groups include older adults, those with reading or language issues and
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anyone wishing to have time-saving tools for better communication with health care
professionals.
Results: The tools have enhanced communication, reduced frustration and
improved relationships between provider and consumer, based on feedback from
both consumers and providers. The tools are popular takeaways at ACPA’s stands at
professional meetings and are among the most popular downloads on their web site.
Lessons learnt: People are eager to communicate better with caregivers and to
comply with treatment strategies. These tools give them a greater sense of control
and help to build a strong functional partnership between consumer and provider.
ACPA intends to expand the series to address other specic conditions and
situations. They feel that tools like these empower consumers and enhance the
therapeutic process.
For more information contact IAPO (www.patientsorganizations.org).
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4.2 EDUCATIONAL SYSTEMS
Schools and other formal and informal educational establishments play a major role
in developing literacy skills and fostering literacy in all countries. Literacy skills may
improve health in many direct and indirect ways. They help children and adults to
learn about what inuences their health, the impact of the choices they make and
where to nd reliable information. Learning may have benets in terms of improving
attitudes to and competencies for engaging in positive health behaviours and making
best use of health services. Literacy improves employment prospects (with associated
health gains), either by helping individuals to move out of unemployment or through
aiding progression in the labour market. Adult participation in learning may also be
benecial for the next generation in terms of improving their chances of learning and
health outcomes. The development of such literacy skills should be a priority and
included in all school and adult education programmes, with particular emphasis on
parental involvement in early years education.
The opportunity to provide health education also exists within institutional
and community-based health services. There is sound justication for embedding
health literacy instruction into these settings for children and adults. Educational
research has documented the impact of context and content on learning, retention
and transfer. This research has shown that learners retain and apply information best
in contexts similar to those in which they learned it (Bereiter 1997; Mayer & Wittrock
1996; Perkins 1992).
BOX 7 : CRITERIA FOR HEALTH EDUCATION CURRICULA
(Lohrmann & Wooley 1998)
1. Be research-based and theory-driven.
2. Include information that is accurate and developmentally appropriate.
3. Actively engage students using interactive activities.
4. All students to model and practise relevant social skills.
5. Discuss how social or media inuences aect behaviour.
6. Support health-enhancing behaviour.
7. Provide adequate time for students to gain knowledge and skills.
8. Train teachers to eectively convey the material.
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For example, children and young people can learn about health and hygiene,
nutrition and physical activity while learning about sexual and reproductive health.
Information about birth control can be given at the same time as information about
the prevention of HIV/AIDS and other sexually transmitted diseases—so-called ‘dual
protection’. Learning opportunities also exist during immunisation experiences, such
that families and recipients understand the disease and the public health benets of
immunisation.
Education and literacy has a positive impact on population health—
particularly on women’s health and the health of their children (Sen 1999; Nussbaum
2000). It is estimated that two-thirds of the world’s 960 million illiterate adults are
women. There is a strong positive reciprocal relationship between female education
and women’s empowerment. Education empowers women by giving them
knowledge and a new perspective on their role. It also improves their earning
potential. Income for women rises by 10–20% for each additional year of schooling.
Educated women are more likely to postpone marriage and childbirth, give better
health care to their families, send their children to school and contribute to overall
economic growth (Kickbusch 2002; Wils 2002).
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The development of literacy skills should be a priority and included in all school and
adult education programmes, with particular emphasis on parental involvement in
early years education.
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The educational intervention should be pitched at a level commensurate
with age, mental capacity, gender and environment. Programmes for adolescents,
for example, might focus on reproductive health (e.g. use of condoms) along with
cancer prevention and detection—breast self examinations, testicular examinations
and annual cervical smears. In young adults, the issues of communicable and non-
communicable disease and the need for parental and childhood vaccination could be
reinforced. Young mothers are receptive to learning about recognising and treating
childhood illnesses. And interventions for people in their mature years—especially
those with chronic illnesses—might focus on self care.
Obstacles to health education initiatives
The World Health Organization (1996) has described several barriers that may
impede the implementation of school health programmes. Firstly, policy makers
and political leaders—as well as the public at large—often do not fully understand
the true impact of modern school health programmes on health. Secondly,
some may not support the programmes because the content is considered too
controversial, for example those that discuss HIV infection, other prevalent STDs and
unintended pregnancy. Thirdly, modern school health programmes require eective
collaboration—especially between separate education and health agencies (IOM
2004). Any planned educational intervention will need to address these potential
obstacles.
Understanding barriers and facilitators to adult learning
According to Hillage et al. (2009), policy actions and interventions to address social
inequities in education (and education-related dierentials in health literacy) must
be based on a clear understanding of why people do not engage with learning
activities, as well as knowing the system and structural barriers and policy enablers.
Three reasons why people do not take part in learning have been identied:
 Dispositional: lack of motivation related to perceptions that the learning is
not relevant to them, lack of interest or condence, and previous negative
experiences at school.
 Situational: Cost, lack of time and/or transport or childcare and language
(especially for non-native speakers) are common situational obstacles.
 Systemic: Poor awareness of options, lack of the necessary information or
availability of the right type of course or learning environment may further block
participation.
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Initiatives which have been shown to stimulate demand for post-16 learning
(Hillage & Aston 2001) generate demand through targeted publicity, advice and
guidance, exible oerings and funding options in community settings, workplaces
and to specic populations (especially to young people, women, people with skill
decits and underserved communities).
Schools and other formal and informal educational establishments play a major role in
developing literacy skills and fostering literacy in all countries. Learning to read and
understand labels, for example, is a basic health literacy competence.
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CASE STUDIES : EDUCATIONAL INTERVENTIONS
1. UCLA/J&J HEADSTART PROGRAMME, US HERMAN 2007
The study involved nearly 20,000 children in 35 states.
Links to health literacy
It gave parents access to
essential health information
and the condence to address
their children’s basic health care
needs.
Approach
Parents were surveyed about
their family’s health care
habits three months prior to
the training and six months
afterward. At the outset, 60
percent said that they did not
have a health book at home to
reference when a child fell ill.
As part of the study, each Head
Start family was given a low-
literacy medical guide, What to Do When Your Child Gets Sick, by Gloria Mayer, R.N.,
and Ann Kuklierus, R.N., which oers clear information on more than 50 common
childhood illnesses. The Health Care Institute training is adapted to various languages
and cultural needs of the participating families.
Outcomes
Tracking the Head Start families enrolled in a health literacy programme, researchers
found that visits to a hospital emergency room or clinic dropped by 58 percent and
42 percent, respectively, as parents opted to treat their children’s fevers, colds and
earaches at home. This added up to a potential annual saving to Medicaid of $554
per family in direct costs associated with such visits, or about $5.1 million annually.
Moreover, parents being better informed about handling their children’s
health needs translated to a 42 percent drop in the average number of days lost at
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work (from 6.7 to 3.8) and 29 percent drop in days children lost at school (from 13.3
to 9.5). Parents also reported feeling more condent in making health care decisions
and in sharing knowledge with others in their families and communities.
Prior to the training, parents said they were “very condent” about caring for
their sick children— yet, in reality 69 percent reported taking a child to a doctor or
clinic at the rst sign of illness. Almost 45 percent said they would take their child
to a clinic or emergency room for a cough rather than provide care at home, with 43
percent doing so for a mild temperature of 99.5°F.
Post training, researchers found a marked improvement in parents’ self
condence, with only 32 percent indicating that they would still go rst to a
doctor or clinic. More signicantly, the number of parents using the medical guide
as a rst source of help jumped from ve percent to 48 percent, indicating a better
understanding and higher comfort level in dealing with common childhood illnesses.
For more information contact ariella.herman@anderson.ucla.edu.
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2. SYNCOPE TRUST AND REFLEX ANOXIC SEIZURES STARSSHINE A
LIGHT ON EDUCATION, UK
Links with health literacy
The Shine a Light on Education programme aims to make school settings more
health literacy friendly for young people with seizures and black-outs by educating
teachers, sta and carers on syncope and training them in condition management.
The programme also provides information and advice for parents and children on how
to cope with syncope in their learning environment.
Every year more than 225,000 young people in the UK experience a blackout.
As a result of this STARS established an education programme for use in educational
establishments from nursery to university. Many young people diagnosed with
a form of syncope (transient loss of consciousness, blackouts, fainting) struggle to
either access full-time/full curriculum education. Older students often nd access to
education is limited/denied.
Based on enquiries, STARS members developed materials and processes:
1) To educate educational establishments
2) To involve families with diagnosed syncope members
3) To initiate and train volunteers
Both educational establishments and STARS members were informed of
these new resources. STARS information booklets and sheets were published and the
Education section of the STARS website was launched with on-line materials. All of the
literature produced for the project is free to patients and educational establishments
and it is all endorsed by the Department of Health in the UK.
Results
1. Centres and families responded positively to the publication of support materials
and the website. This was evidenced through the rise in requests for booklets
and the 1 million hits on the website.
2. Numerous presentations have taken place across the UK and the uptake for these
events has been signicant.
3. The number of requests from schools for information and presentations has
continued to grow. So far, 50 schools have requested presentations which STARS
provides free of charge.
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The project’s success is illustrated by the fact that across the UK, educational
establishments, carers and pupils diagnosed with syncope continue to contact STARS
for information and guidance. STARS has received many enquiries from families and
schools, seeking advice and support on reex anoxic seizures (RAS). To date 1,000
information booklets have been sent out following requests; 15 SIR presentations
have been made to nurseries, schools and colleges with ten more pending, and
requests are coming in weekly.
Lessons learnt
It is important to anticipate growth in demand. The current popularity of the
programme means that STARS needs more trainers to provide equal support across
all areas of the UK.
Better education about a condition leads to improved communication
between families and schools, care and management improves and education is more
successfully accessed, especially for those previously denied or limited from activities.
For more information contact IAPO (www.patientsorganizations.org).
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3. REGIONAL CHILDREN’S ANTIRETROVIRAL THERAPY ART LITERACY
TOOLKIT, AFRICA
Background
The ART Literacy Toolkit is also known
as the Kid’s ART Literacy Toolkit. It
seeks to enable children to gain a
comprehensive level of literacy around
HIV and ART issues pertinent to them.
It aims to empower children (primarily
aged between 6-11 years, though also
relevant for teens) who are living with
HIV and ART, helping them gain an
appreciation of HIV and ART in context.
Links with health literacy
For use in educational systems, this
Toolkit is designed for children and
members of their ‘circle of care’,
including:
 teachers within school-based programmes;
 parents and guardians within the family environment;
 leaders within the religious sector; and
 health care workers, social workers, community workers and counsellors within
a service provision context.
Lessons learnt
Using a cascade method, the model was able to be spread throughout community
members, who used and adapted it. The booklets helped children unpack both the
specic and practical issues related to HIV and ART through ‘edu-tainment’ activities,
encouraging them to take action within their own lives to make a dierence. Simple
cartoons taught children to overcome challenges and changes in the body and helped
them learn how to integrate treatment into daily living. Children were encouraged to
identify their fears and develop solutions as well as plan for their future hopes and
dreams.

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Further Information
Each toolkit contains:
 an 8-booklet series with narratives, and edu-taining activities to address basic
facts about HIV and ART, testing and disclosure, support for a child on ART,
stigma and discrimination, positive living, adherence, supporting other children
on ART, and suggested ways of using the toolkit;
 a child’s adherence calendar and a watch, to enhance adherence responsibility
amongst children;
 an interactive poster that engages the child to actively process ‘Respect’ as a
foundation of being responsible, not violating rights and alleviating stigma and
discrimination;
 a brochure on tuberculosis (TB) and HIV co-infection, ART, and children;
 three advocacy stickers;
 an HIV and ART knowledge board game; and
 a pack of 20 quiz cards on HIV and ART issues.
The Toolkit is published by Southern Africa HIV and AIDS Information Dissemination
Services (SAfAIDS).
See http://www.comminit.com/en/node/274893 for more information.
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4. BEAT IT! HIV/AIDS TREATMENT LITERACY SERIES, SOUTH AFRICA
Background
The Beat It! HIV/AIDS Treatment Series is a training resource consisting of a series of 21
programmes on DVD or VHS and accompanying workbooks. The series was designed
to support discussion and workshops on HIV/AIDS treatment.
Links with health literacy
Used in educational systems, the series provides an introduction to the core
information needed to respond creatively to people living with HIV/AIDS in their
environment. It combines personal documentary accounts of people living with HIV/
AIDS with expert advice and explanations. Each programme has an accompanying
workbook that provides additional information and a summary of the topic.
Lessons learnt
The workbook can help facilitators prepare and present HIV/AIDS treatment
information, oers questions to stimulate discussion and oers methods of checking
whether the information has been understood.
Further Information: The literacy series is published by Community Health Media Trust.
See http://www.comminit.com/en/node/187822 for more information.
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5. SPEAKING BOOKS, SOUTH AFRICA
Background
Books of Hope, in association with the South African Depression and Anxiety
Group, designed and produced these interactive, multilingual speaking books that
can be seen, read, heard and understood by the reader regardless of their reading
ability. These hard-backed books feature a sound track, read by well-known local
personalities, to take the reader on a step-by-step guide to wellness and encourage
readers to build self-condence through a simple action plan.
Links with health literacy
The Books of Hope series has been created to meet the Health Care Education needs of
Africa’s rural and disadvantaged communities and as a means of overcoming the low
levels of literacy. Speaking books are distributed in the communities they serve and
paid for by government departments, foundations and organisations.
Lessons learnt
The concept of a Speaking Book can be applied to meet a whole range of needs from
educating young children on health care issues such as diabetes and asthma, and
how they can cope with their illness, to direct mail promotional material to support
a product or service where the novelty factor will ensure that the recipient will get
the message.
Topics of the books include:
 Teen suicide prevention
 HIV and AIDS doesn’t mean living with depression
 Living free of Tuberculosis (TB)
 Mobilising against malaria
 Treating trauma and Post-Traumatic Stress Disorder (PTSD)
 HIV and AIDS medication - taking the rst step
 Allies against substance abuse
 Help for child-headed households
Further Information: See http://www.comminit.com/en/node/188442 for more
information.
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6. Open, Distance and Flexible Learning (ODFL) in HIV/AIDS Prevention
and Mitigation for Affected Youth, South Africa and Mozambique
Background
Education is a key protective factor against HIV; however, school dropouts are
increasing in many aected countries. This paper, based on eld studies in
Mozambique and South Africa undertaken by the Institute of Education, University
of London, looks at the potential of open, distance and exible learning (ODFL) to
increase access to education for youth who are out of the formal education system.
Links to health literacy
Through the educational systems oered by ODFL, learners can choose the time, place
and pace of their study. A signicant proportion of the teaching is done by someone
removed in space and/or time from the learner. In health education, ODFL has helped
to:
 increase access to education (especially for remote or marginalised groups)
 enhance school quality to increase child survival and family health
 raise public awareness and action on health initiatives
 encourage people to practise healthy behaviours.
In this research of ODFL in Mozambique and South Africa, researchers found
that AIDS has been declared an emergency threatening development, peace and
stability and that the response of the education sector has focused largely on the
curriculum to provide relevant information, life skills and the teacher training to
deliver them through schooling. There are few strategies to address the needs of
out-of-school youth, even though children are increasingly missing lessons, dropping
out of school and unable to access the national curriculum or develop basic literacy,
numeracy or livelihood skills.
In South Africa, ODFL eorts to prevent the spread of HIV have largely relied
on television and media campaigns such as Soul City, LoveLife and Khomanani. In
Mozambique, where lack of infrastructure reduces opportunities for mass media
campaigns, HIV prevention methods are mostly face-to-face with some ODFL support
materials, such as My Future My Choice and Geracao Biz. Experience with these
programmes has shown that to be successful young people must participate in the
design and implementation of the activities to make sure they are tailored to their
literacy levels and real-life contexts.
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Lessons learnt
There is now a real opportunity to change policy, accelerate the educational response
and transform ineective systems. But for this to happen there is a need to radically
rethink ways that education can be delivered. ODFL could play a much greater role in
such educational reforms by sharing the burden schools face and helping to integrate
responses to learners’ needs more eectively.
Further Information: See http://www.comminit.com/en/node/219772 for more
information.
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7. POSITIVE ACTION FOR TREATMENT ACCESS PATA, NIGERIA
Background
Positive Action for Treatment Access (PATA) is a non-governmental organisation
working to ensure that every individual has access to treatment education and
every person can access qualitative, aordable, ethical and humane treatment. The
organisation conducts advocacy, trains media and organisations and works to provide
information for treatment literacy.
Links with health literacy
The organisation’s objectives are to:
 promote access to treatment education;
 advocate for access to aordable qualitative diagnostic tests and drugs to treat
HIV/AIDS;
 ensure non-discriminatory gender-based responses to HIV/AIDS prevention and
treatment;
 support the full participation of people with HIV/AIDS in all responses;
 work in partnership with other persons and institutions including governments
to facilitate information sharing and build platforms for networking;
 build capacity of people and institutions at all levels to ensure an increase in
treatment access; and
 facilitate sector-wide HIV/AIDS prevention, testing and treatment of HIV/AIDS.
Lessons learnt
Objectives are met through a number of diering initiatives that cover a broad
range of communication and advocacy strategies. Action can be taken in a variety of
settings, including through varying educational systems, both formal and informal,
through media, workshops, programmes, newsletters and other means. Examples
include:
 The Frontiers Project – A programme designed to reach middle and upper class
people living with HIV/AIDS, as most HIV/AIDS programmes in Nigeria focus on
the economically poor.
 Media Education Project – PATA has developed a 10-episode Health Tip segment
for a national network programme with over 30 million viewers and facilitated a
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number of training workshops for Nigerian journalists. PATA also has a column in
a leading Nigerian newspaper.
 Treatment Advocacy – PATA helps to keep treatment issues on the front burner of
the HIV/AIDS agenda and help communities to understand what is available and
can be strengthened.
 Resource Mobilisation Project – PATA has introduced a Buyers Club to help
alleviate the nancial burden of purchasing drugs for HIV/AIDS treatment. This
aims to start a drug revolving fund for the purchase of tax-free drugs to help
those who cannot aord the expensive drugs and/or have no access to free and/
or subsidised government programmes.
 Public Education – PATA has been involved in a lot of treatment literacy
programmes in health facilities and other support groups of people with HIV
in various parts of the country. PATA has also given talks in churches, schools,
Alumni associations and other clubs and societies. They have been involved with
training sta of organisations on treatment literacy and HIV prevention.
 People for People Project (Stigma Fighter) – In June 2004, PATA conducted
a training of 50 people from organisations and support groups on HIV/AIDS
related stigma and discrimination, formulating a stigma ghter corps who made
a commitment to challenge and address stigma and discrimination wherever
they see it manifest.
 Positive Moments – PATA’s newsletter aims to full the organisation’s vision of
ensuring universal knowledge about HIV/AIDS and universal access to aordable,
ethical treatment.
Further Information: See http://www.comminit.com/en/node/127765 for more
information.
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4.3 MEDIA MARKETPLACES
For many people media marketplaces—including print, radio, television, internet,
mobile phones and public advertising spaces—are a main source of health
information. These marketplaces shape people’s health perceptions, behaviours
and choices even though they often contain information of variable quality that
can be more confusing than helpful. Separating fact from ction requires some
well-developed health literacy skills. National health information services, like the
NHS Direct in the UK (http://www.nhsdirect.nhs.uk/), can help people decipher the
variety of health information. Some quality standards and certications, such as the
Health On the Net (HON) standards (http://www.hon.ch/HONcode/Conduct.html),
have been developed for quality control of health web pages but have not yet been
applied globally and have not been shown to make websites easier to understand.
Commercial and political interests often dominate the media marketplaces.
Industries such as tobacco, alcohol and fast food companies use sophisticated
communication techniques which glamorise and promote unhealthy products and
lifestyles. Recognising and countering these negative health messages require
literacy skills to distinguish credible, reliable and independent information from
sales-driven product marketing and advertising.
Interventions
Increasingly, public health advocates and educators are using a wide range of
technologies, media and social marketing approaches to get independent evidence-
based information to stand out and shape people’s perceptions, choices and
behaviours.
People need credible, reliable, accessible and understandable information so
that they can avoid risky behaviours. This might be about lifestyle choices, mental
wellbeing, the control of infectious diseases and environmental threats to health.
Such information can help raise people’s understanding of risks, enable them to
make healthy choices and counteract the negative inuences of some industries.
Interventions can also be used to shape the development of policies and structures
that can protect health—for example smoking bans in public places.
This domain of health literacy activity has been a very active intervention
area in all countries. Public information approaches which support health literacy are
thought to provide a necessary basis for:
 informed decision-making
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 understanding of bias and levels of evidence
 statistics and probabilities, and
 critical thinking skills
Ratzan (2001) points out that in designing eective and understandable
health communications it is important that the context and content reect the
realities of people’s everyday lives and communication practices.
It is also essential to include the viewpoints and experiences of the target
population in the design, implementation and evaluation of all interventions (IOM
2004).
Furthermore, health information that is developed from an interdisciplinary
approach, which includes a variety of dierent health, education, social and cultural
perspectives, is more likely to be eective, adopted and successfully diused within
individual communities (Allen 2001; Manderson 1999; Watters 2003).
Social Marketing
Social marketing uses marketing principles alongside socio-psychological theories
to develop behaviour change programmes. It takes the planning variables from
marketing (product, price, promotion and place—see Box 8 below) and reinterprets
them for health issues. It seeks to address and adjust where needed the psychological,
social and economic contexts that surround behaviour choices (NSMC 2007a; Hastings
2007
5
). Social marketing approaches focus on the needs of well-dened consumer
groups—a shortcoming of ‘traditional’ public health communication. A key principle
is that if you try to reach everybody, you reach nobody.
5
Gerard Hastings’ book provides a series of instructive case studies, to which the reader is
referred.
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BOX 8 : THE ‘FOUR PS’ OF SOCIAL MARKETING
Product refers to something the consumer must accept: an item, a behaviour, or an
idea. In some cases, the product is an item like a condom, and in other cases it is
a behaviour such as not drinking and driving. Price refers to psychological, social,
economic, or convenience cost associated with message compliance. For example, the
act of not drinking in a group can have psychological costs of anxiety and social costs
of loss of status. Promotion pertains to how the behaviour is packaged to compensate
for costs—what are the benets of adopting this behaviour and what is the best way
to communicate the message promoting it. This could include better health, increased
status, higher self esteem or freedom from inconvenience. Finally, place refers to the
availability of the product or behaviour. If the intervention is promoting condom
use, it is essential that condoms be widely available. Equally important to physical
availability, however, is social availability. Condoms are more likely to be used when
such use is supported and reinforced by peer groups and the community at large.
(Wallack et al. 1993, p22)
Edutainment
Educational entertainment approaches—so-called ‘edutainment’—have been
shown to have a positive impact upon learning and action by target audiences. For
example, studies indicate that discussions of immunisation on soap operas in some
countries have actually increased the number of mothers seeking vaccinations for
their children (Glik et al. 1998).
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CASE STUDIES : MEDIA MARKETPLACE INTERVENTIONS
1. SOUL CITY, SOUTH AFRICA
Links to health literacy
Soul City, a non-governmental organisation (NGO), uses mass media campaigns to
change health practices at the individual, interpersonal and community levels.
The project used television and radio entertainment-education programmes
that were broadcast nationwide. The television programme consisted of a 13-part
Soul City’s Violence against Women Booklet.
Soul City is a dynamic and innovative multi-media health promotion and social change project.
Through drama (soap opera) and entertainment, Soul City reaches more than 16 million
South Africans. For more information see www.soulcity.org.za.
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drama, broadcast weekly on prime-time national television. The radio programme
was a 45-part drama broadcast daily. These were supplemented by printed materials
distributed nationwide through newspapers and a national advocacy strategy
involving lobbying of government and decision makers.
The media campaign addressed issues in HIV/AIDS and youth sexuality,
domestic violence and sexual harassment, hypertension, and small business
development and personal nance.
Impact: Soul City entertainment-education broadcasts were received by
more than 80% of the target audience; perceived as credible source of health-related
messages; and eective in increasing health literacy, especially with reference to
domestic violence and HIV/AIDS.
Specic ndings include:
Reach: The television and radio programmes reached diverse audience
segments in terms of education, age, sex and geographical location. Forty-two
percent of the television audience and 54% of the radio audience lived in rural areas;
66% of the television audience and 67% of the radio audience were women; 38%
of both audiences were youth aged 16-24; and 22% of the television audience and
26% of the radio audience had no formal schooling or some level of primary-level
education only.
Audience reception: A qualitative assessment of focus group and interview
responses in six sites revealed that the entertainment-education was perceived as
a relevant, credible and entertaining educational vehicle. The audience members
reported that the broadcasts conveyed constructive and pro-social modelling of
attitudes and behaviours and showed plausible alternatives or coping strategies in
realistic and familiar settings.
Lessons learnt
Impact on creating a supportive environment: The ndings provided
evidence that Soul City contributed to creating a supportive environment for
facilitating behaviour change, particularly in the areas of domestic violence and HIV/
AIDS. Soul City had impacts on lobbying, media advocacy and community mobilisation
(e.g., public marches) that led to the successful legislation of the Domestic Violence
Act in 1999. The ndings pointed to synergetic eects of Soul City, such as the
television and radio dramas’ positive impacts on the usage level of the Stop Women
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Abuse Helpline and the AIDS helpline, and the enhanced communication between
community leadership and their constituencies who used the television and radio
dramas as common reference points.
Impact on social and interpersonal environment: The ndings
suggested that the Soul City entertainment-education contributed to the
empowerment of local communities. It raised collective health consciousness,
facilitated a sense of collective empowerment to eect change, facilitated collective
action and the formalisation of community structures, reinforced social networks,
and provided positive vision and hope for a better future.
Impact on individual change: The exposure to the Soul City
entertainment-education was associated with the greatest improvement in
knowledge and awareness of the Domestic Violence Act, condom use, community
action against domestic violence, knowledge and awareness of where to nd support
regarding violence against women, and intention to do something to stop violence
against women. There was no quantitative evidence of an impact on personal attitudes
pertaining to sexual behaviour, sexual behaviour itself, and attitudes and subjective
social norms around sexual harassment. The study concludes by discussing the factors
that contributed to the positive outcomes of Soul City including: the multimedia
format, the drama edutainment format, the synergy of multiple, mutually reinforcing
intervention components, historical dealing with multiple issues, an understanding
of the importance of collectivism, and a theory-based intervention strategy.
For more information, see http://www.soulcity.org.za/publications/papers-1/
evaluating-health-communication.pdf/view.
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2. PROJECT RADIO, MADAGASCAR
Background
Implemented in 1999 by the Andrew Lees Trust (ALT), in collaboration with 71 local
partners, non-governmental organisations (NGOs) and service providers, Project Radio
is a rural radio communications network for development funded by the European
Commission. The project aims to deliver education and information to isolated
rural populations in the South of Madagascar via radio broadcast empowering rural
producers, women and children who live in some of the economically poorest areas of
the South. It strives to improve their food security, alleviate the eects of poverty and
increase general standards of living.
Links to health literacy
According to organisers, over three-quarters of the rural population are illiterate and
villagers have few means to learn how to improve their situation and reduce their
economic and social vulnerability. However, Project Radio claims, aural learning
traditions in Madagascar mean that the local people have a far greater capacity than
Western audiences to listen to radio and remember details of key messages.
Using the media marketplace, the programmes on Project Radio reach
approximately 900,000 people directly at a cost of less than one euro per head per
year. They cover a range of topics including cattle rearing, animal husbandry, food
security, farming, natural resource management, environment, healthcare, HIV/
AIDS awareness, mother and child health, family welfare, education and culture.
Since the project’s further expansion in 2006, an average of 30-40 new programmes
are produced each month in local languages and distributed to 40 local FM radio
stations in Tulear and Fianarantsoa Provinces, which broadcast the programmes in
exchange for radio equipment. Villagers are able to listen to the programmes via
Freeplay clockwork and solar-powered radios which the project places with village
‘responsables’. Listening groups are formed around these radios and are requested to
participate in programme research, production and monitoring.
Further information: The Contribution of Radio Broadcasting to the Achievement
of the Millennium Development Goals: Research Findings and Conclusions of a Study
of the Andrew Lees Trust Project Radio.
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Lessons learnt
The overall conclusion of the research was that the project is achieving some
notable success in changing and enhancing knowledge and attitudes on topics
such as HIV/AIDS, family planning, mother and child health, environmental issues,
social and administrative issues, and gender inequality. Radio is also reportedly
having a positive impact on uptake of health services, enrolment in literacy classes,
construction of environmentally-friendly woodstoves, tree-planting, agricultural
yields, and awareness of strategies for poverty reduction through income generation
and community associations.
See http://www.comminit.com/en/node/113895 for more information.
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3. RADIO APAC, UGANDA
Background
Launched in October 1999, Radio Apac is a community radio station broadcasting in
northern Uganda that works to sensitise and educate residents of Apac about HIV/AIDS
and other issues of importance to the community. Radio Apac was implemented by
a partnership of the Commonwealth of Learning, an Apac-based non-governmental
organisation (NGO) called Apac Sustainable Development Initiatives (ASDI) and
members of the Apac community. Together they hope to improve the way and speed
via which community members access and share information, as well as to improve
the livelihood of Apac’s people through participatory initiatives that are inspired by
its broadcasts.
How it fits in with health literacy
Through use of the media marketplace, Radio Apac has specic objectives that
include:
 Support the community and stimulate rural development by facilitating access
to information.
 Stimulate and create capacity-building within the community by providing
access to local, national and international information services and resources.
 Import skills in information searching including the use of modern information
technologies.
 Generate, record, broadcast and store local information and knowledge from
resources available to the community.
 Conduct relevant training for building entrepreneurial skills of the women and
youth in the community.
Lessons learnt
The station has learned the importance of engaging with the community in the
production of programmes, holding research workshops to identify the broadcast
information needs of communities. In an eort to reach as many community
members as possible, its programmes are bilingual, multi-cultural and multi-ethnic,
responding to the social and cultural needs of minority groups. Furthermore, the
station recognises women producers and other minorities in the overall production
of its programmes.
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Initial programming was educational – including distance education for
primary and secondary schools, adult literacy programmes, health education,
nutrition based on traditional foods, AIDS awareness and farming practices.
Programming has expanded to include agriculture, health, women and youth,
environment, business, vocational training programmes and governance. Also, Radio
Apac broadcasts programmes provided by Voice of America (VOA).
Further Information: Radio Apac’s partners are National Association of Broadcasters
Uganda, Community Multimedia Center Network, World Association of Community
Radio Broadcasters, AMARC Africa.
See http://www.comminit.com/en/node/132280 for more information.
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In post-modern society digitalized images and information can be more
compelling than reality! Health literacy advocates need to capture the
power of the media to help individuals and agencies improve their skills
and capacities.
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4. MOVING FAMILY PLANNING PROGRAMS FORWARD: LEARNING FROM
SUCCESS IN ZAMBIA, MALAWI, AND GHANA. THE REPOSITIONING FAMILY
PLANNING CASE STUDY SYNTHESIS REPORT
Background
As part of the Repositioning Family Planning Program, this 26-page evaluation
report shares information from three case studies undertaken in countries that were
identied as having been successful in increasing contraceptive use and lowering
fertility – Ghana, Malawi and Zambia. The case studies found that the programmes
were successful not just through supply-side interventions, but also through eective
and innovative eorts on the demand side, including both working with the
communities and bringing services closer to rural populations. Key messages were
developed in consultation with the community to ensure that they were appropriate
and meaningful.
Links with health literacy
As an evaluation of the family planning systems in Ghana, Malawi and Zambia, the
report shows how each country reacted to an increased use of the media marketplace.
In Zambia supply of services was increased and there was a strong emphasis on
demand creation through a number of communication activities, such as creation of a
family planning logo and radio and television programmes. The TV and radio campaign
was particularly successful and the report shows that 24.4% of listeners of any radio
programme were currently using family planning compared with only 11.9% of non-
listeners. In Malawi, the Contraception Prevalence Rate (CPR) increased from 7% to
26% between 1992 and 2000, across the economic spectrum. On the demand side,
communication in many languages was used, such as radio jingles, posters, dramas,
health talks and community based activities, ooding Malawi with information,
education and communication (IEC) messages developed through community
consultations. Under the Ghana Family Planning and Health Program (1991-1996)
IEC activities addressed constraints including widespread myths, rumours and health
fears. Then in 2001 the Ghana Health Service launched the Life Choices behaviour
campaign to reposition family planning in people’s minds and dispel rumours about
methods. The campaign gave people the knowledge and tools to see that family
planning was directly related to their lives and their personal aspirations for a better
future. Vans that brought information, materials and songs moved throughout the
country. Nearly 7 out of 10 men and half of the women interviewed in 2003 reported

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that they had heard the key slogan of the campaign - “Life choices: It’s your life, it’s
your choice.”
Lessons learnt
The evaluation highlighted the importance of addressing the demand side of family
planning through eective IEC. Communication activities helped to bring about a shift
from seeing family planning as not only a way to limit the number of children (which
often led people to associate family planning with not having any children at all) to
seeing it as a way to space births and improve the health of women and children. The
high levels of knowledge of family planning in all three countries demonstrate that
IEC can be eective even in settings with low literacy. Exposure to IEC messages was
associated not only with increases in knowledge but also with changes in behaviour,
such as increased use of modern contraception. The report concludes that to develop
appropriate messages, it is essential to consult the community.
See http://www.comminit.com/en/node/275898 for more information.
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5. ANDREW LEES TRUST, IMPACT EVALUATION OF PROJECT RADIO SIDA,
MADAGASCAR
Background
Since 2003, the Andrew Lees Trust (ALT) has collaborated with the National HIV AIDS
Awareness Committee of Madagascar (Comité Nationale Lutte contre le SIDA - CNLS)
to deliver HIV information via radio to rural populations in southern Madagascar.
ALT also distributed 2,000 radios for the CNLS across the Provinces of Toliara and
Fianarantsoa, setting up dedicated listening groups to receive national broadcasts
about HIV/AIDS as well as locally produced radio programmes on the subject.
According to the organisers, explaining complex medical issues to an illiterate
audience is challenging, particularly in this region where traditional beliefs attribute
illnesses to spirit possession.
Links to health literacy
This project aims to open up the media marketplace by producing radio programmes
about HIV/AIDS and creating increased access to radios in the rst place. An
evaluation of the project found that radio is the most important source of information
on HIV/AIDS in Madagascar. During the evaluation, radio was mentioned by 89% of
the respondents as most important. Amongst the urban population, 96% mention
radio; in rural areas, the percentage is slightly lower at 82%. In addition, 71% of
the participants mentioned having heard a radio programme on HIV/AIDS made by
Project Radio.
Lessons learnt
The evaluation also found that the programme increased knowledge of three modes
of transmission of HIV. Of those surveyed, 75% mentioned both sexual relations and
blood, 96% mentioned sexual relations and 78% mentioned blood as methods of
transmission. Only 38% mentioned mother-to-child transmission. The survey also
found that some false beliefs on transmission continued to be held, the most frequent
being transmission by mosquitoes (15%). Also, some people still feared transmission
through water or through sharing of clothes.
The evaluation also indicated sound knowledge of methods of prevention.
Of the respondents, 77% mentioned both using condoms and being faithful, 95%
mentioned using condoms, 81% mentioned being faithful and 28% mentioned
abstinence. Furthermore, the evaluation suggests that programmes on stigma and
discrimination have a major impact on attitudes towards people living with HIV and
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AIDS (PLWHA). It states that people’s rst reaction is to isolate and make public the
identity of PLWHA, as the community is considered more important than individuals.
According to the organisers, after hearing a programme on stigma and discrimination,
attitudes changed very fast.
Further Information: See http://www.comminit.com/en/node/269640 for more
information.
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Knowledge of how HIV is transmitted from mother to child may help in the prevention
of disease.
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6. ALAM SIMSIM OUTREACH PROGRAM, EGYPT
Background
The Alam Simsim Outreach Program is a collaboration between Al Karma Productions
(Cairo, Egypt) and Sesame Workshop (New York, USA). Alam Simsim is a multiple
episode, half-hour television series, designed to provide children with an opportunity
to learn a broad range of literacy, numeracy, cognitive and social interaction skills,
using humour, music, fantasy and daily life situations. It is the Egyptian adaptation
of the educational television series Sesame Street. Alongside the TV series is an
outreach initiative, launched in December 2002, providing parents and caregivers
with information about improving the health, hygiene and nutrition of their children.
Working closely with local community development associations (CDAs), the outreach
team developed a 2-month training component, as well as educational materials for
parents and children (such as booklets, ash cards and a healthy habits calendar).
Links with health literacy
The media marketplace was used here to reach children with an educational system
in place to back it up. In brief, evaluators found that “both parents and children
beneted” from the outreach programme, in that it “had a signicant impact on
health, hygiene and nutrition practices.” While there was evidence of positive changes
for many families, routines requiring commercial items such as toothbrushes were
beyond the means of the poorest households. Notably, some families with limited
economic means engaged in eective alternative practices such as brushing teeth
with ngers. In terms of hygiene the outreach programme had a measurable impact.
For example, exposure to the outreach programme was related to reported increases
in the frequency of making sure that children washed their hands before eating (a
gain of 5% over the control group) and washing face with soap and water (a gain
of 15% over the control group). However again, nancial circumstances confronting
some families can be crucial considerations in the design of future training and
outreach programmes. For example, researchers found that “not all parents could
aord the additional expenses of separate towels, toothbrush and toothpaste, and
having salad, fresh fruits and milk regularly.” They recommended that the Alam
Simsim outreach programme continue to model a variety of strategies, including ones
that are most aordable and accessible.
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Lessons learnt
Important health knowledge and behaviours increased after participation in the
programme. For example, 32% more parents and caregivers with the experimental
group (those exposed to the outreach programme) demonstrated knowledge of
the Diphtheria, Pertussis (Whopping Cough) and Tetanus (DPT1) vaccine, whereas
knowledge levels of DPT1 remained relatively unchanged within the control group.
Further Information: This outreach initiative reached approximately 10,600 parents,
teachers and other caregivers in Minya, Beni Suef and Cairo governorates between
April 2003 and January 2004.
See http://www.comminit.com/en/node/70400, http://www.comminit.com/en/
node/149170 and http://www.comminit.com/en/drum_beat_343.html for more
information.
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4.4 HOME AND COMMUNITY SETTINGS
People are called upon to make daily health-related decisions in their homes and
communities. Families, friends, peers and community resources are key sources
of health information. These sources model behaviours and shape the early and
continuing development of functional health literacy skills related to product and
service choices. They also provide basic information about health-promoting, health-
protecting and disease-preventing behaviours, as well as self- and family care,
‘alternative therapies’, available support services and rst aid.
4.4.1 Challenges
Chronic diseases
According to WHO (cited in Pruitt and Epping-Jordan 2005), chronic diseases—for
example diabetes, emphysema, heart disease and cancer—currently account for
more than half of the global disease burden in both developed and developing
countries. People with chronic diseases have more health literacy demands, such as
the need for self management (see below), the need to coordinate care with multiple
providers and the ability to manage multiple, lifelong prescription medications. These
people, however, often have poorer health literacy skills.
Patients with chronic diseases and limited health literacy have been shown to
have poor knowledge of their condition and of its management. They also experience
diculties with oral communication. A study of patients with diabetes found that
poor health literacy was associated with worse blood sugar control and higher rates
of complications such as retinopathy, blindness, heart disease and strokes (Schillinger
et al. 2004; Williams et al. 1998a, 1998b).
WHO and several international health professional associations have called for
major changes in health workforce training to develop the provider skills required to
meet the health literacy and other needs created by the prevalence of chronic illness.
Skills called for include the ability of providers to support self-managed care, build
more partnership-based provider–patient relationships and communicate more
eectively (Pruitt & Epping-Jordan 2005).
Self management
In the past, patient health management was primarily the physician’s responsibility.
However, in many health systems people are increasingly encouraged to take more
responsibility for their own health. To make appropriate self-management decisions,
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people must locate health information, evaluate the information for credibility
and quality and analyse risks and benets. Furthermore, people must be able ask
pertinent questions and express health concerns clearly by describing symptoms in
ways the providers can understand (IOM 2004).
Moreover, people are increasingly challenged to make sound health decisions
in many contexts of daily life. For example, they have to read and understand product
labels and warnings; make lifestyle choices about food, activity, cigarettes and drugs;
and evaluate the safety of chemicals in products they buy. Such decision making
requires an understanding of the benets of being healthy and information about
personal health issues. All of these everyday demands require people to be able
to assess their current health and consider and deal with the many socioeconomic
factors and cultural values that inuence it. For all this they need to have health
literacy competencies that allow them to take responsibility for their own and their
family’s—and, where necessary, their community’s—health (Kickbusch & Maag
2008).
Finally, many people use alternative therapies. This includes traditional healing
approaches, nutritional supplements, acupuncture, homeopathy and a wide variety
of other therapeutic and healing techniques. The estimated global market for such
interventions equals or exceeds allopathic health care markets in many countries.
The need to make choices between alternative approaches and standard medical care
creates further challenges.
Community participation
Community participation aims to identify, shape and advance shared interests in
priority issues for community health. This might be investment in education for
self-care, increased penetration of vaccinations, elimination of vectors and control of
sexually transmitted diseases. Investment in such participatory health literacy skill
development can help individuals use systems more eectively and also serve as
catalysts for change, when needed, within systems (IOM 2004).
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CASE STUDIES : COMMUNITY INTERVENTIONS
1. PALLITATHYA HELPLINE CENTRE, BANGLADESH
Launched by Development through Access to Network Resources (D.Net), Pallitathya
uses mobile phones to both increase access to information for people living in
Bangladesh’s rural areas and to create economic opportunities for underprivileged
women.
Links to health literacy
This initiative uses face-to-face contact and information and communication
technologies (ICTs) to provide information about services such as:
 directory services: basic information about location, availability and cost of
health, legal support and agricultural services;
 education information services, such as admission deadlines in dierent
educational institutions; and
 emergency information dissemination services about disease outbreaks,
violations of human rights and other natural disasters.
Pallitathya employs ‘Mobile Operator Ladies’ to go from door to door with a
mobile phone. Villagers can ask questions about their livelihood, agriculture, health,
legal rights, and so on anonymously. The questions are answered by help desk
operators at D.Net’s headquarters in Dhaka, who are equipped with a database and
the internet. While the service is oered to both men and women, a key strategy
involves using technology to increase women’s access to information and economic
opportunity. Women were given a crucial role as ‘infomediaries’ in an eort to increase
their self-worth, their potential to earn and their knowledge about various issues.
The Pallitathya Help-Line Centre was developed after ndings showed that a
lack of timely and relevant information was a major bottleneck to rural development
and a leading factor in the exploitation of the underprivileged, particularly women.
D.Net notes that there is “disproportionate hype around using computers and
Internet for tackling issues of economic deprivation and social injustice”, due to a lack of
adequate infrastructure, internet penetration and the inability of many Bangladeshis
to use these tools. In contrast, the mobile phone has a 60% geographical coverage in
Bangladesh. The help-line is designed to bridge these various information gaps.
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Lessons learnt
Among the four villages chosen for the research phase, the village which had the
lowest income level and was the most remote was the most active in terms of making
calls to the help-line. Furthermore, housewives were the biggest user-group, perhaps
because they are the most deprived in terms of access to information. Finally, the
research project found that most queries were in the areas of health (majority of
which came from housewives) and agriculture (majority of which came from farmers).
For more information see http://www.comminit.com/en/drum_beat_344.html item
no. 21, and http://www.comminit.com/en/node/132155.
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2. SOCIETIES TACKLING AIDS THROUGH RIGHTS STAR
Background
Operating in Angola, Bangladesh, China, Ethiopia, Gambia, Ghana, India, Liberia,
Malawi, Mozambique, Nepal, Nigeria, Sierra Leone, South Africa, Tanzania, Uganda,
Vietnam, Zambia and Zimbabwe, Societies Tackling AIDS through Rights (STAR)
is designed to be a comprehensive, integrated methodology which combines the
strength of participatory learning about HIV and AIDS with empowerment and social
change. It focuses on relationships and communication skills with the intention of
reducing HIV transmission, improving sexual reproductive health (SRH) and fostering
gender empowerment. This is combined with an approach to adult learning that
seeks to enable people to plan their development activities based on the local reality.
According to the organisers, the STAR methodology evolved from two participatory
approaches: Stepping Stones (SS) and REFLECT (Regenerated Freirean Literacy
through Empowering Community Techniques). SS is a participatory learning package
that focuses on relationships and communication skills with the aim of reducing
HIV transmission, improving SRH and fostering gender empowerment. REFLECT is a
structured participatory learning process that facilitates people’s critical analysis of
their environment, as well as the identication and discussion of problems, resulting
in practical solutions relevant to the local context.
Links to health literacy
The STAR approach seeks to address misinformation or lack of information on HIV/
AIDS issues and fragmented responses. It is also designed to address issues of gender
equity and break barriers to communication by enhancing the capacity of individuals
to open up and talk about sensitive issues. The process includes identifying specic
actions, for example demanding appropriate information and services from service
providers. Some of the actions are intended to be self challenges to the participants
themselves, especially around customs and stigma which are considered to fuel the
epidemic.
The approach is also designed to strengthen the literacy and communication
of vulnerable people, especially women and girls, giving them skills to negotiate,
open up dialogue within the household and community and participate in taking
decisions. It also intends to help increase the capacity of the economically poor and
people living with HIV to advocate for their priorities, particularly around HIV/AIDS,
for example, demanding increased access to testing and aordable treatment.
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Lessons learnt
In order to facilitate this process, the project included the training of community
facilitators and community-based organisations, especially women’s groups, in policy
advocacy and rights-based approaches to communication and mobilisation. Methods
such as drama, role play and community dialogue were used. According to the
organisers, there was systematic and continuous data collection, analysis, learning,
documentation, publications and sharing to wider actors to help scale up the
approach. Part of the strategy was to facilitate linkage between STAR programmes
and other community-based organisations to create mass mobilisation to interact
with local government and institutions.
Further Information: See ttp://www.comminit.com/en/node/271534 for more
information.
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The internet and other media marketplace information sources shape people’s health
perceptions, choices and behaviours and can have positive and negative impacts
on people’s health literacy.
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3. MATERNAL AND NEWBORN CARE PRACTICES AMONG THE URBAN
POOR IN INDORE, INDIA: GAPS, REASONS AND POTENTIAL PROGRAMME
OPTIONS
The Urban Health Resource Center (UHRC) identied interventions to strengthen
maternal-newborn care practices and care of infants aged 2-4 months (feeding
practices, morbidity status, immunisation status, and nutritional status) in urban
slum dwellings of Indore city, Madya Pradesh (India). The recommendations are
based on ndings from a study carried out by UHRC between December 2004 and
February 2006 in 11 out of 79 slums where its Indore Urban Health Program has been
operational since April 2003.
Links to health literacy
The methods used in this research include interviews with mothers of infants 2-4
months old, with mothers of low birth weight infants who were thriving, and slum-
based traditional birth attendants (TBAs); assessment of cold stress, hypothermia
and associated danger signs in newborns; assessment of under-nutrition amongst
infants and newborns; and group discussions (GDs) with citizen-based organisations
(CBOs) and mothers of infants. Also discussed in this report are reasons for following
these practices, what facilitates and what hinders following optimal practices, and
potential programme options for their improvement.
Lessons learnt
Strategies for supporting mothers and newborns through antenatal care in their
home and community settings include:
 Enable families to perceive the benets of appropriate antenatal care practices
through persuasive reinforcement of optimal practices by trained slum-based
CBOs and involving early adopters as change aides in group meetings/home
visits. Early adopters include a progressive early adopter/relative/neighbour/an
elder lady of the community.
 Encourage families and/or pregnant women to join a health savings fund group
from which they can draw money if needed for health care.
 Train ‘Basti’ Community-Based Organisations (BCBOs) through pictorial and
group discussion, accommodating literacy issues, to monitor behaviours of
mothers and assess their progress.
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 Establish ‘outreach camps’ for individual appointments, particularly in the
evenings, and group discussions. Attempt to partner with private medical
providers when possible to increase condence in outreach camps.
 Refresher training for BCBOs and TBAs, related to resuscitation; cutting and tying
the cord tie; and thermal protection.
Strategies for supporting mothers and newborns through postnatal care include:
 Health volunteers trained in lactation-related counselling to support and
encourage mothers;
 Providing the BCBOs with pictorial material that can enable them to: a) counsel
and conduct post-natal visits; and b) maintain records of mothers;
 Specic strategy for mothers who migrate to native villages for delivery, perhaps
a take-home pictorial card or poster and persuasive counselling;
 Strengthening of linkage of community with aordable public and private
hospitals that are already accessed by slum dwellers.
Further Information: See http://www.comminit.com/en/node/276695 for more
information.
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4. A COMMUNITYBASED HEALTH EDUCATION PROGRAMME FOR BIO
ENVIRONMENTAL CONTROL OF MALARIA THROUGH FOLK THEATRE
KALAJATHA, INDIA
Background
Kalajatha is a popular, traditional art form of folk theatre depicting various life
processes of a local socio-cultural setting. It is an eective medium of mass
communication in the Indian sub-continent, especially in rural areas. This method
can be used to carry out a community-based health education programme for bio-
environmental malaria control.
Links to health literacy
In India there is no standard format for delivering health education messages on
malaria and conventional methods have limited impact. Thus, Kalajatha has been
used experimentally as a medium of mass communication to assist the malaria control
programme, in community settings. In December 2001, the Kalajatha events were
performed over two weeks in a malaria-aected district in Karnataka State, southern
India. Thirty local artists, including ten governmental and non-governmental
organisations (NGOs), actively participated. Local scriptwriters were involved, writing
songs and rupakas (musical dramas) on aspects of malaria, including signs and
symptoms of sickness, treatment, health facilities, processes of transmission, role of
anopheles mosquitoes and names of the malaria vectors and the breeding grounds of
mosquitoes. The role of the community was also a key part of the scripts. Local media
followed up with reporting on the events and key messages.
Lessons learnt
Impact assessments held in the focus villages and a random group of villages using
semi-structured interviews showed that respondents had signicantly gained
information and knowledge about malaria, its symptoms, transmission and control
methodologies. Although immediate behavioural changes especially in maintenance
of general hygiene were not observed, follow up control measures by authorities built
on the community’s acceptance to bring about needed behavioural changes.
Further Information: See http://www.comminit.com/en/node/270643 for more
information.
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5. ‘TB CLUBS’, ETHIOPIA
Background
TB clubs were initially formed when, in an eort to simplify organisation, health
services requested that TB patients living in a particular kebele come to follow-up
appointments at the nearest health facility together and on the same day. As a
result, the patients got to know each other and began to form TB clubs. The District
Medical Ocer promoted the development of the TB clubs and provided advice on
organisational arrangements.
Links to health literacy
The success of the project can be attributed to community participation. This is
described as the process by which individuals and families assume responsibility
for their own health and welfare, and for those of the community, and develop
the capacity to contribute to their and the community’s development. The TB club
approach makes the patients the principal actors in TB control eorts and shows
that even in a remote rural area, and using long-course treatment, high treatment
success rates are achievable through a district TB control programme with community
involvement and committed leadership. The members of each TB club elect a leader,
who is usually literate, who ensures that all members attend the TB clinic on the
appointed day and informs the clinic sta if a member is absent. The leader co-
ordinates regular meetings of the TB club at least once a week to provide support
for each other in adhering to treatment, to share information about the course of
the disease and possible drug side-eects, and to help in identifying tuberculosis
suspects. They then refer tuberculosis suspects and tuberculosis patients failing to
make satisfactory progress or suering from drug side-eects to the local health
facility. The leaders may approach other members of the community for help with
encouraging and supporting patients to complete their treatment. The District
Medical Ocer has supplied the TB club leaders with educational materials written
in Amharic, the main language of the region. Members of the TB clubs exchange
information on tuberculosis with community members through role-playing and
public reading and dissemination of educational materials. Local health workers and
community health agents supervise TB clubs regularly and contribute to community
education activities and the identication and referral of tuberculosis suspects.
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Lessons learnt – Findings
According to a report from 2000, the proportion of tuberculosis patients who came
for follow-up during treatment at health facilities signicantly increased after the
introduction of the TB clubs. The TB clubs referred 181 tuberculosis suspects in the
community for investigation, of whom 65% subsequently had a positive diagnosis
for tuberculosis. TB clubs identied 69% of all patients and 76% of new sputum
smear-positive pulmonary patients diagnosed in the district. Treatment success rates
in new sputum smear-positive, smear-negative and extra-pulmonary tuberculosis
patients were 83%, 79% and 81% respectively. In 1996 other success rates reported
in Ethiopia ranged between 35% and 72%.
Further Information: Although TB clubs do not incur any extra costs from the
perspective of the health service provider, an economic analysis is necessary to
assess whether the patients incurred any nancial costs. Further evaluation of the
contribution of the community to tuberculosis control activities in rural Ethiopia
through the TB club approach is needed to assess the sustainability of the approach
and its feasibility in other settings.
See http://www.comminit.com/en/node/269321/38 for more information.
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6. LIVERPOOL’S CHALLENGE, UK
Liverpool, like many UK cities, has seen a signicant rise in obesity in recent years. In
the city, an estimated 40% of the adult population is overweight and 20% obese. It
is estimated that obesity results in over 130,000 sick and costs the National health
Service and the city’s wider economy an additional £20m a year.
Liverpool PCT launched its Healthy Weight: Healthy Liverpool strategy in April
2008, with the objective of stopping and ultimately reducing the level of obesity in
the city from 2010. Liverpool’s Challenge, devised and managed by Liverpool Primary
Health Care Trust’s social marketing team, is a strand of that long-term strategy.
The team commissioned extensive qualitative research into the target
audience in order to develop an insight into their everyday lives and understand
the motivations and barriers to adopting healthy eating and exercise practices. The
insights developed from analysis and interpretation of the research showed that
people wanted to lose weight and become more active but struggled to change their
habits. They needed support – not only in practical terms but in feeling that they
were not alone.
And so Liverpool’s Challenge was created – an innovative challenge to residents
to pledge to lose one million pounds of weight. A pre-launch ‘teaser’ campaign with
the strapline ‘We’ve got one million pounds to lose’ generated curiosity prior to the
launch and saw local radio stations holding on-air discussions to guess what the
advertisements meant. In September 2008 all was revealed and Liverpool’s Challenge
launched with a media campaign that created high levels of awareness and a sense of
something ‘big’ happening in the city.
Links to health literacy
The project used a community wide initiative to bring a positive framing to weight
loss and make information, support and system navigation easier and more enjoyable
for all. The ‘Million Pound Tanker’, a converted milk tanker, provided the focus for the
launch event and was a mainstay of the campaign, taking the message out to local
people as it toured the city. Inside the tanker, visitors were met by a receptionist and
given a goodie bag before meeting with a health professional to have their Body Mass
Index measured and receive free, condential lifestyle advice. Outside the tanker in
the ‘Active Zone’, ‘Live Zone’ and ‘Food Zone’, community food workers gave cookery
demonstrations and handed out food samples and cookery books, while tness
instructors showed how to use tness equipment and handed out vouchers for free
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gym or swim sessions. Each community event was run by people from within the
community, such as health trainers and community food workers, and featured a
wide range of performances by local community groups from armchair exercises to
free-running and yoga.
Liverpool Primary Health Care Trust’s social marketing team negotiated
partnerships with key local media outlets. Local celebrities lent their support
throughout, attending ‘tanker’ events, providing quotes for the press and attending
photocalls. The campaign has advertised in Boots stores (Chemists), GP surgeries, job
centres, community centres, cafes and other public venues to keep the Challenge at
the front of the public’s minds. The frequency of the campaign was increased in areas
of the city with high prevalence of obesity.
Lessons learnt – Initial outcomes
The collective nature of the challenge helped people to feel that they were joining
a club of like-minded people. Residents signed up in their thousands, with 1,500
pledging in the rst week and the website receiving 50,000 hits. The campaign is
ongoing and will be fully evaluated in early 2010, but interim evaluation shows that
at the halfway point it has exceeded its interim targets, with more than half a million
pounds pledged by February 2009. Research shows high levels of local awareness,
with 13% spontaneous awareness in January 2009 (compared with Weight Watchers
3%), 72% visually-prompted awareness and 58% of participants claiming to have
lost weight in December 2009.
For more information contact Julia.Taylor@liverpoolpct.nhs.uk.
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4.5 WORKPLACE SETTINGS
The workplace directly inuences the physical, mental, economic and social wellbeing
of workers and, in turn, the health of their families, communities and society. It
oers an infrastructure to improve health literacy through educational and health
promotional interventions.
By providing clear and consistent health messages to employees, employers
can help prevent accidents and lower the risk of industrial or occupational diseases.
Health-promoting work environments go further, with specic health and wellbeing
policies and dedicated support for employees to address lifestyle choices, such as
alcohol and drug use, and stress factors, including job security, demand–control,
eort–reward in the workplace and issues related to achieving an appropriate work–
life balance.
Workplace health promotion
WHO (2008) has dened workplace health promotion as the combined eorts of
employers, employees and society to improve the health and wellbeing of people at
work. It places particular emphasis on improving the work organisation by increasing
workers’ participation in shaping the working environment and encouraging
professional development.
  Workplace health promotion focuses on a number of factors, such as the
promotion of healthy lifestyles and non-occupational factors in the general
environment. Non-occupational factors include family welfare, home and commuting
conditions, and community factors (and risks) which aect workers’ health.
While some health promotion activities in the workplace tend to focus on a
single illness or risk factor (for example, HIV/AIDS or heart disease) or on changing
personal behaviours (for example, smoking and diet), there is growing appreciation
that there are multiple determinants of workers’ health. In addition to person-
focused interventions, workforce health promotion initiatives have moved toward a
more comprehensive approach, which goes beyond safety issues and acknowledges
the combined inuence of personal, environmental, organisational, community and
societal factors on employee wellbeing.
WHO has introduced the concept of the health promoting workplace (HPW)
as an integrated way of paying proper attention to workers’ health and safety. HPW
programmes aim to:
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 Help workers make healthier decisions and choices for themselves and their
families;
 Reduce workplace-related health risks;
 Enhance awareness and action regarding protecting health from work-related
environmental factors (e.g. pollution control);
 Inuence occupational health and safety programmes so they help reduce
worker and community risks;
 Use the workplace setting for medical diagnosis, health screening and
assessment of functional capacities; and
 Link with other community-based activities related to major diseases (e.g., HIV/
AIDS, heart disease) as part of larger disease prevention and control strategies.
(WHO 2008)
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CASE STUDIES : WORKPLACE INTERVENTIONS
1. PREVENTING HIV/AIDS ON ROAD PROJECTS IN CHINA
The Baolong Healthy & Safe Action (BHSA) Project was designed by the Asian
Development Bank (ADB) and implemented in Yunnan Province of the Peoples
Republic of China (PRC) on the border of Myanmar.
Links to health literacy
Recognising the HIV risk that the Baolong Highway construction project potentially
posed to local communities and construction workers, this project integrates a
package of health interventions including: behaviour communication change (BCC)
strategies, condom social marketing, advocacy, community mobilisation and HIV
prevention.
The project sought to reach over 20,000 construction workers in villages
and townships along the highway to help prevent HIV/AIDS spread during the
construction phase. It was hoped that this strategy could be shared and adapted to
other highway construction projects in PRC and elsewhere in the region.
Partnerships were developed with a range of stakeholders. For example, the
Bureau of Culture supported lm nights in construction sites and local communities;
the media communicated HIV and project-related messages through radio, television
and newspapers; communication companies developed new strategies such as
sending short text messages to highway construction workers; local villages and
community-based organisations provided peer educators in entertainment sites and
social mobilisers in villages along the highway.
The findings
In the rst year of implementation the project has reached over 2,000 people for
the rst time, 900 people in one-to-one peer education, and over 20,000 people in
group and community events. In addition, the Project trained over 300 people to be
peer leaders and educators and sold or distributed for free over 80,000 condoms. The
ndings of the follow-up survey, which was conducted in August 2006 to evaluate
impact after the rst year of implementation, showed the project had limited impact
on changing the behaviours of drivers.
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Lessons learnt
The BHSA project found that those who are at most risk of HIV are middle managers,
evaluators, subcontractors and drivers, all of whom have more disposable income,
are more mobile and are more likely to need to socialize and impress their work
colleagues. With the exception of drivers, these populations also have more
education and knowledge about HIV/AIDS issues but nevertheless reported higher
risk behaviours. This emphasises the need for HIV prevention messages to go beyond
knowledge and address attitudinal and behavioural change through compelling
motivational messages, address issues of peer pressure, and develop skills that
support behaviour change.
For further information: See http://www.comminit.com/en/node/269706.
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2. ADHERENCE TO ANTIRETROVIRAL THERAPY IN ADULTS: A GUIDE FOR
TRAINERS, KENYA
Background
This training manual was developed for the Antiretroviral Therapy Program in
Mombasa, Kenya by the Horizons Program of the Population Council, the International
Centre for Reproductive Health and the Coast Province General Hospital, Mombasa. It
consists of four modules to be conducted over four sessions of approximately two
hours each.
Links to health literacy
Used in workplace settings this manual aims to provide trainees with a basic
understanding of the challenges of Highly Active Anti-Retroviral Therapy (HAART)
and adherence to antiretroviral therapy. It is designed for health workers including
physicians, clinical ocers and adherence nurse counsellors in antiretroviral (ARV)
programmes.
The rst module provides a background on adherence to ART and is relevant
for all health workers involved in ART service delivery. Modules two, three and four
provide detailed adherence management of a patient on ART designed for adherence
nurse counsellors. Physicians in particular would benet from attending the session
on Module Two. The objective for each session is given at the beginning. The
methodology, the materials required, the expected duration and the handouts are
given in the margin at the beginning of each exercise. Handouts for the training use
actual patient literacy materials, counselling checklists, pill charts and medication
demonstration charts being used in the Mombasa ART programme.
Topics include:
 Preparatory Adherence Counselling;
 Patient Preparation for Adherence;
 The Multidisciplinary Adherence Team;
 HIV Infection and Antiretroviral Treatment;
 Strategies and Tools to Enhance Adherence.
The manual uses dierent techniques in these modules: brainstorming, small
group discussion, Power Point presentations, case studies and role-play. Brainstorming,
small group discussions and interactive sessions provide an opportunity for a large
number of participants to share their views. Power Point presentations are useful in
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providing participants with the theory and background on the topics being discussed.
Case studies help participants discuss and understand the issues in a practical way.
Role-play provides practical training in developing adherence-counselling skills.
Further Information: The manual is published by Horizons/Population Council and
International Centre for Reproductive Health, Coast Province General Hospital, Mombasa.
See http://www.comminit.com/en/node/184430 for more information.
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4.6 POLICYMAKING ARENAS
Policies at all levels—institutional, community, national and regional—shape the
factors which determine health literacy and health. The engagement of citizens
in policy-making processes is a fundamental democratic principle. Furthermore,
a key trend in many health system reforms is empowerment of patients and the
development of more patient-centred care. To function eectively in politics and
policy-making, people need the ability to advocate for policy change; be active
citizens (for example, have a vote); be knowledgeable about health rights and
responsibilities; and be able to participate in health organisations.
Challenges
Financial crisis
The world is confronting a severe nancial crisis at a time when it is also facing major
energy and environmental problems and wide social inequalities. While the crisis has
global roots, its impact is already being felt unequally between regions and countries
(WHO 2009). Many experts point to long-lasting consequences for health all over the
world. The crisis may lead to an opportunity to trigger signicant changes in social
norms, lifestyles and health-related behaviours or it could lead to a widening of social
inequalities and further health literacy disparities.
Social determinants and health inequities
The Commission on the Social Determinants of Health (CSDH 2008)

makes a strong
case for the root causes of health and health literacy inequities as being based on
structural societal factors, such as income dierentials, lack of social protection or
universal health care access. They call for society-wide action to address these factors
and to reduce dierential exposures to risks, dierential vulnerabilities to both acute
and chronic disease, and dierential outcomes of care that poorer people in every
country experience on a socially determined gradient. This social health gradient
means that each successive social class is worse o with regards to their health than
the class just above them.
Numerous studies (see section 2 above) demonstrate that poor health literacy
skills are associated with a wide variety of negative health outcomes. Furthermore,
studies point to clear social class dierences in health literacy skills (Kickbusch et al.
2008). The CSDH does not deal directly with the issue of health literacy in their report.
The relationship of health literacy to socially determined inequities is an important
area for further study. This guide sees health literacy as a dierential capacity that
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results from the same structural factors which the CSDH identies as underpinning all
other health inequities.
Enhancing health literacy and improving the health literacy friendliness of
key sectors and settings may help address some of the dierential health outcomes
of poorer people. Importantly, in the process of addressing health literacy needs of
individuals in key societal ‘domains of inuence’, greater awareness of the underlying
causes of health inequities will emerge and with it broader support and advocacy
action for the societal changes being called for by the CSDH.
Advocacy
This guide sees advocacy as an important part of the health literacy skills continuum.
Advocacy, as discussed here, applies mainly to policy changes in systems. These
‘systems’ include any institution, community, citizen group, association or agency,
governmental or non-governmental, public or private, national or international, that
can inuence individual and community health.
BOX 9 : A DEFINITION OF ADVOCACY
Apfel 2008
Blending science, ethics and politics, advocacy is self-initiated, evidence-based,
strategic action that people can take to help transform systems and improve the
environments and policies which shape their own and others’ behaviours and choices,
and ultimately their health.
A note of caution
The recommendations in this section of the guide focus on advocacy approaches in
democratic countries. Advocacy assumes that people have rights and that these rights
are enforceable: for example, the right to voice opinions openly as well as the right
to adequate health care, pollution-free environments, employment and housing.
Advocacy often focuses on ensuring that these rights are exercised, respected
and addressed. Advocacy approaches are potentially eective only in political
environments where:
 policy-makers can be inuenced by public opinion; and/or
 governments can and do take action to protect the rights of their citizens; and/or
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 there is an open and free media through which people can express themselves/
nd a voice (Sen 1990).
Where these public freedoms do not exist, the most eective way of changing
policy may not be through direct advocacy. It may require action from outside the
country, from international agencies, and from actual and potential economic
partners, as for example during apartheid in South Africa (Sida 2005). Anyone
advocating for change in undemocratic environments may be putting themselves at
risk and are advised to take a strategic, long-term perspective and, where possible,
strengthen links with appropriate international advocacy groups.
The ICN Guide to Health Professional Advocacy is included as an annex to this
report.
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Encyclopedia of Public Health. Elsevier Inc. pp98-104.
Wolf MS, Davis TC, Skripkauskas S, Bennett CL & Makoul G. 2006. Literacy, self-
ecacy, and HIV medication adherence. Patient Education and Counseling.
Wolf MS, Feinglass JM, Carrion V, Gazmararian J & Baker D. 2006. Literacy and
mortality among Medicare enrollees. [Abstract]. J Gen Intern Med. 21:81.
Wolf MS, Gazmararian JA & Baker DW. 2005. Health literacy and functional health
status among older adults. Arch Intern Med. 165:1946-1952.
WHO. 2009. Health in times of global economic crisis: implications for the WHO European
Region. Paper presented at Oslo meeting, April 2009.
WHO. 2008. Occupational health. http://www.who.int/occupational_health/topics/
workplace/en/index1.html [accessed 24/4/09]
World Health Organization (WHO). 1996. Improving School Health Programme: Bar-
riers and strategies. Geneva: World Health Organization.
Wilberforce M. 2005. Graduate Market Trends (Prospects). Sheeld: Department for
Education and Skills.
Youmans S & Schillinger D. 2003. Functional health literacy and medication
management: The role of the pharmacist. Annals of Pharmacotherapy.
37(11):1726-1729.
CASE STUDIES : POLICY INTERVENTIONS
1. NORTH KARELIA PROJECT: FROM DEMONSTRATION PROJECT TO
NATIONAL ACTIVITY, FINLAND
The North Karelia Project was launched in Finland in 1972 in response to the local
petition for help to reduce the burden of exceptionally high coronary heart disease
mortality rates in the area. In co-operation with local and national authorities
experts, as well as with WHO, the North Karelia Project used interventions involving
health and other services, schools, NGOs, innovative media campaigns, local media,
supermarkets, food industry, agriculture, etc.
The Project included a comprehensive evaluation and has acted as a blueprint
for other national and international interventions. Over the years the scope of the
project has been broadened to include other major non-communicable diseases and
health promotion, as well as prevention of risky lifestyles in childhood and youth.
Main results
The published results of the North Karelia Project show how over the 25-year period
major changes have taken place in the levels of target risk factors in North Karelia.
Among the male population in North Karelia, smoking has greatly reduced and
dietary habits have markedly changed. In 1972 52% of middle-aged men in North
Karelia smoked. In 1997 the percentage had fallen to 31%.
In the early 1970s, use of vegetables or vegetable oil products was rare; now it
is common. In 1972 about 90% of the population in North Karelia reported that they
used mainly butter on bread. Today it is less than 7%. The dietary changes have led to
about 17% reduction in the mean serum cholesterol level of the population. Elevated
blood pressures have been brought well under control and leisure time physical
activity has been increased.
Among women, similar changes in dietary habits in cholesterol and in blood
pressure levels took place. At the same time, however, smoking somewhat increased,
but from a low level.
By 1995 the annual mortality rate of coronary heart disease in the middle-
aged (below 65 years) male population in North Karelia has reduced about 73% from
the pre-programme years (1967-71). This reduction was especially rapid in North
Karelia in the 1970s and again after the mid 1980s. During the last ten years the
decline in cardiovascular (CVD) mortality in North Karelia has been approximately
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8% per year. Among women, the reduction in CVD mortality has been of the same
magnitude as among men.
Conclusions
The results of the North Karelia Project show that a well-planned and determined
community-based programme can have a major impact on lifestyles and risk factors.
This, in turn, leads quite rapidly to reduced cardiovascular rates in the community.
Furthermore, it demonstrates the strength of community-based approaches in
changing people’s risk factors as well as giving practical experience in organising such
activities.
The experiences also actively helped inform comprehensive national action
with good results. The decline in heart disease mortality in Finland during the last
few years has been one of the most rapid in the world and the overall health of the
adult population has greatly improved.
For more information see http://www.who.int/hpr/successful.prevention.6.shtml.
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2. SOUTHERN AFRICA HIV AND AIDS INFORMATION DISSEMINATION
SERVICE SAFAIDS
Background
Established in 1994 and operating in Angola, Botswana, Lesotho, Malawi, Mauritius,
Mozambique, Namibia, South Africa, Swaziland, Zambia and Zimbabwe, SAfAIDS is
a regional non-prot organisation based in Harare, Zimbabwe. It works to promote
ethical and eective development responses to HIV/AIDS through knowledge
management, capacity development, advocacy, policy analysis, and research with
special emphasis on gender and human rights.
Links with health literacy
SAfAIDS activities are organised around the following core principles:
 promoting understanding, analysis and focus on the critical impact of HIV and
AIDS as a development issue rather than simply as a health issue;
 disseminating information that is eective in promoting changes in knowledge,
practice and behaviour of individuals and communities using an evidence-based
approach taking into account lessons and best practices;
 promoting the use of multi-sectoral and multi-faceted regional responses and
interventions to the epidemic;
 inuencing key agencies to mainstream HIV and AIDS and gender-related issues
into their development work; and
 promoting the meaningful involvement of people living with HIV and AIDS
(PLHIV) in SAfAIDS work in the region.
Its strategies include use of the media, online forums, resource centres,
documentation of best practices and various publications. It has also established
a Policy Desk whose main purpose is to produce and disseminate HIV and AIDS
information to both political and civil society leadership so that they can contribute
towards the creation of a conducive HIV and AIDS policy environment. According to
the organisers, HIV and AIDS information has been designed for the general public
over the years, while political leadership has largely been left out. This created a gap
in information levels between the two sections of the population resulting in limited
opportunities of engagement to support the development of a comprehensive HIV
and AIDS policy and legislative environment.
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SAfAIDS partnership approach involves working through identied strategic
partners who will contribute to a multiplier eect. The capacity building approach
involves strengthening the ability of partners to provide SAfAIDS products and services
to grassroots communities, ensuring continuity of services and thus sustainability.
SAfAIDS implements its activities through collaborative alliances: increasing diversity,
uniqueness and synergy, thereby promoting learning and sharing in a complementary
and sustainable manner.
Further Information: http://www.safaids.net/ for more information.
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3. WHY LANGUAGES MATTER: MEETING MILLENNIUM DEVELOPMENT
GOALS THROUGH LOCAL LANGUAGES
Background
Published in the International Year of Languages (2008) by SIL International, the 16-
page brochure provides readers with stories about how literacy programmes in local
languages are intending to achieve the Millennium Development Goals (MDGs).
Links with health literacy
The document addresses the policy making arena by posing the questions:
1. Can the development of minority languages become key to helping people
create their own way of successfully meeting the challenges in their lives?
2. Can writing systems for mother tongues and multilingual education become
tools for people to build a better present and a better future?
3. Are the long-term results worth the investment of money and time?
It uses examples of local language for each of the MDGs to show how
“communities are discovering that by using their languages in new arenas of their
lives, they can begin discovering solutions to the challenges stated in the MDGs.”
Examples include:
· MDG 1: Eradicate Extreme Poverty and Hunger – When a language group helped
a Democratic Republic of Congo village chief develop his health literacy skills,
he learned that “soybeans are rich in protein, [and] he encouraged everyone
in his village to plant them. He later learned from another booklet about the
components of a proper diet, and again encouraged his community to eat from
each food group daily so they could improve their health through nutrition.”
· MDG 3: Promote Gender Equality and Empower Women – A Quechua-speaking
Peruvian, Margarita, studied at night to nish her primary education and beyond,
ultimately earning a university degree in psychology. “Using that knowledge
and her skills, Margarita founded a volunteer organization that provides social,
psychological and educational help to hundreds of displaced and sometimes
abused Quechua women and children – using the language they understand
best.”
· MDG 8: Develop a Global Partnership for Development – Speakers of several
closely-related languages of Vietnam now have a font that is usable on computers
and the internet. “The new typeface reects the traditional hand-written Tai
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Viet script that is used informally in several languages spoken in the northwest
provinces of Vietnam and surrounding areas. Participants at a United Nations
Educational, Scientic and Cultural Organization (UNESCO)-sponsored workshop
in Vietnam in 2006 developed a standardized encoding for the script with input
from ethnolinguistic communities in Vietnam and immigrant populations in
other countries. Funding came in part from the Script Encoding Initiative of the
University of California at Berkeley, and the Unicode Consortium accepted the
resulting encoding proposal.”
Further Information: See http://www.comminit.com/en/node/278103) for more
information.
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4. EMPOWERMENT AND INVOLVEMENT OF TUBERCULOSIS PATIENTS
IN TUBERCULOSIS CONTROL. DOCUMENTED EXPERIENCES AND
INTERVENTIONS
Background
This 40-page publication from the World Health Organization (WHO) and the Stop
TB Partnership describes dierent national experiences in empowering and involving
patients with tuberculosis (TB) in the management of their disease. It presents the
results of a review of the available literature with the intention of identifying possible
trends and conclusions and suggesting ways of informing policymakers and further
research.
According to the executive summary: “The review of documented experience
covers the means used to enable patients to take more responsibility for their health
and, in particular, for adherence to treatment; organizing TB patients into groups and
clubs; ensuring patient-centred TB and general health care; and helping TB patients
to use advocacy to improve TB control. It describes the operational denitions of and
potential barriers to empowerment and the importance of context, including the
characteristics of stakeholders, incentives, the performance of TB programmes and
the burden of TB. These issues must be explored carefully in evaluating and planning
the scaling-up process.”
Links with health literacy
The document includes strategies for the empowerment of TB patients in their
capacity to take control of their own care and lives. It hopes to inform policymakers,
so that better decisions are made in the future. Methods include peer support by TB
patients and cured patients, counselling, a buddy system, education about pill taking
and advocacy and social mobilisation in support of TB control services. The document
analyses what hampers TB treatment, including general barriers to accessing health
services, particularly for the economically poor, women and other vulnerable groups;
stigmatisation and isolation of and discrimination against TB patients; ‘patient
control’ in TB programmes; and belonging to vulnerable groups. The document
points to programmes that recognise these barriers and either focus on overcoming
hampering aspects or match specic interventions for specic populations.
Empowering patients includes motivating, informing and enhancing patient
economic capacity. This may take the form of motivational interviewing, designing
culturally sensitive informational tools for patient-centred care, or providing loans
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113
or food assistance combined with drug therapy. Self-help groups can be established,
in various structures based on social mobilisation, de-stigmatisation, group therapy,
support for adherence to treatment, and psychological and nancial support from
former patients.
In concluding, the document asks for stakeholders – non-governmental
organisations (NGOs), activists for persons living with HIV/AIDS, and academic
institutions – to empower TB patients through:
 understanding patient motivation and the interventions to stimulate it;
 systematic evaluation of current methods of empowerment;
 attention to successes that might be scaled up; and
 greater involvement of the TB patients themselves, in order to foster the strength
of agency of, for example, the community of persons living with HIV/AIDS.
Further Information: See http://www.comminit.com/en/node/266449/38 for more
information.
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SECTION 5: MESSAGES TO KEY STAKEHOLDERS
General Public
1. Strengthen your own health literacy—engage with formal and informal
education systems.
2. Ask and act—seek out information from health providers, systems and other
reliable sources. Where access is denied, advocate for change.
3. Support others—join forces with others in patient associations or community
groups seeking enhanced alignment between skills and demands.
Policy Makers
1. Recognise the importance of strengthening health literacy and that
improvements in health equity, aordability and quality require health literacy.
2. Put health literacy on the agenda. Develop policies that support health literacy
development.
3. Fund necessary research.
Health Professionals and Advocates
1. Approach health literacy with ‘universal precaution’: i.e., assume everyone has
weak health literacy skills and pay careful attention to all communications. Weak
health literacy is common and often undisclosed.
2. Create health literacy friendly health care settings. Adapt materials, forms and
signs accordingly. Make navigation easier.
3. Enhance your communications skills. Provide information in accessible,
understandable and culturally sensitive ways. Professional schools and
professional continuing education programmes in health and related elds,
including medicine, dentistry, pharmacy, social work, anthropology, nursing,
and public health, should incorporate communications into their curricula and
areas of competence.
4. Advocate for system change where needed. Use your professional associations
and cultural authority to catalyse policy and structural changes needed to
strengthen people’s skills and systems’ healthy literacy friendliness.
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Researchers
1. Develop and test assessment tools which can measure skills and abilities and
demands and complexities. Current assessment tools and research ndings
cannot dierentiate among (1) reading ability, (2) lack of background knowledge
in health-related domains, such as biology, (3) lack of familiarity with language
and types of materials, and (4) cultural dierences in approaches to health and
health care. No current measures of health literacy include oral communication,
writing, advocacy and citizenship skills and none measure the health literacy
demands on individuals within dierent contexts.
2. Develop causality models that can explain the relationships between skills and
demands at dierent life stages and in dierent settings.
3. Evaluate interventions. There is a need for more intervention-based evaluations
with guidance on ecacy and eciency.
Educators
1. Use all formal and informal settings to teach health literacy. Educators should take
advantage of all opportunities to transfer relevant health-related information.
2. Use new approaches and technologies. There is a need to develop more non-
reading solutions, recognising that addressing health literacy goes beyond
better-written communications.
3. Pay attention to dierent needs throughout the lifespan.
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SECTION 6: BUILDING NATIONAL AND LOCAL HEALTH LITERACY
ACTION PLANS
1. Recognise the problem and its significance. Include health literacy
on your action agenda.
 Assess health literacy among your target populations.
 Measure the alignment of skills/abilities with task demands/complexity.
Both must be measured. The goal is for both to be ‘health literate’.
 Identify and monitor indicators that will reect progress toward aligning
skills with demands.
 Measure skills and abilities on multiple levels. What gets measured gets
done.

2. Support improvements in education and information access.
 Make health literacy skills an essential element on school agendas.
 Help children and adults opt for healthy choices in everyday life.
 Help people access and evaluate reliable sources for health information.
3. Build health literacy friendly systems that better align demands
with skills.
 Identify the specic health demands/tasks for targeted health actions.
 Understand and simplify navigational demands.
 Sensitize and train providers.
 Identify and communicate essential information and desired behaviours
in an accessible, understandable and culturally sensitive way.
Individual level: reading
assessment tools
Community level: geo coding
mapping
Population level: household
surveys
Measures of Skills
and Abilities
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4. Set, measure and evaluate goals for improved alignment of skills/
ability with task demands/complexity.
5. Engage with members of your target population at all stages of
planning, implementation and evaluation. The real experts in health
literacy are those with trouble understanding what they must do to take care
of their health.
Tasks: How complex are they?
Information: Is it understandable?
Navigation demands: Can they
be simplied?
Measurements of
Demands/ Complexity
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ANNEX 1 ICN HEALTH ADVOCACY MANUAL
PROMOTING HEALTH
ADVOCACY GUIDE FOR HEALTH PROFESSIONALS
INTERNATIONAL COUNCIL OF NURSES
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WHCA gratefully acknowledges support from WHO Healthy Cities Programme Liverpool,
the International Alliance of Patients’ Organizations and
Johnson & Johnson in the production of this publication.
World Health Communication Associates Ltd
Little Harborne, Church Lane, Compton Bishop,
Axbridge, Somerset, BS26 2HD, United Kingdom
Tel. & Fax: +44 (0)1934 732353
e-mail: franklin@whcaonline.org
Website: www.whcaonline.org
World Health Communication Associates (WHCA)

2

1

tel/fax (+44) (0) 1934 732353. Little Harborne. e-mail: franklin@whcaonline. 2 . Compton Bishop. International Alliance of Patients’ Organizations Scott Ratzan. chlorine-free paper with vegetable-based ink. Johnson & Johnson Carinne Allinson. storage in a retrieval system. MHS. Liverpool Tony Boyle. provided that credit is given to the original source. MD. or transmission in any form or by any means. Liverpool Primary Health Care Trust Joanna Groves. Rollins School of Public Health of Emory University Ruth M Parker. Professor of Medicine. World Health Communication Associates is UK limited company no. Printed by Edition & Imprimerie on recycled. International Alliance of Patients’ Organizations Jeremiah Mwangi. Director. Somerset. Franklin Apfel. Associate Faculty. Senior Policy Officer. Brussels. UK. MD. All rights reserved. Requests for permission should be directed to World Health Communication Associates. CHES. INSPIRIT International Communications. World Health Communication Associates Cover and layout design by Tuuli Sauren.org. Axbridge. Emory University School of Medicine Julia Taylor. Neighbourhood Public Health Manager. Vice President Global Health. CEO. WHCA Managing Director Kara L Jacobson.© 2010 by World Health Communication Associates Ltd. Belgium. MD. MPH. Up to 10 copies of this document may be made for your non-commercial personal use. BS26 2HD. WHO Healthy Cities Programme. 5054838 registered at this address. Church Lane. Cataloguing Information: ISBN 978-1-907620-00-3 Published by World Health Communication Associates Ltd This manual is a publication of the WHCA Action Guides Project. Editor. You must have prior written permission for any other reproduction.

TABLE OF CONTENTS 6 9 12 13 15 18 18 18 20 21 23 24 26 28 29 30 30 40 42 44 45 48 50 3 .

52 56 58 60 62 63 64 66 68 71 74 76 78 80 82 84 86 88 90 92 4 .

93 95 97 99 101 103 106 108 110 112 114 116 118 5 .

Switzerland in July 2009. 6 . We also want to thank Jeremiah Mwangi. It builds on Part 1. particularly submissions to the Communication Initiative (CI) website (http://www. Ministers of State and Finance who were gathered at that meeting called for action plans to enhance health literacy on all levels. the Liverpool Healthy City Project. “Evidence and Case Studies”. To assist in this process. importantly. The case studies included in Part 2 have been gathered by the International Alliance of Patients’ Organizations (IAPO). case studies of interventions that have been taken in a variety of settings in many different countries. make information more accessible and understandable. community and policy-making settings easier. “The Basics”. Julia Taylor. education systems and work. which was published on the occasion of the United Nations Economic and Social Council (ECOSOC) meeting in Geneva. In so doing. Erik Luntang. Kate Hodgkin. “The Basics”. As with the WHCA Health Literacy Guide Part 1.com/). Special thanks to Stacy Cooper Bailey and Michael S.comminit.FOREWORD The World Health Communication Associates (WHCA) Health Literacy Action Guide Part 2. is presented as a practical resource for use by local. Part 2 of the WHCA Health Literacy Guide series includes a more detailed review of evidence and. actions described not only focus on individual behaviour change but also look at initiatives being taken to strengthen and adjust systems in order to address institutional and structural deterrents to health literacy. and make ‘navigation’ through health. Steve Turner. Additionally. Mike Jempson and Carinne Allinson for collecting case studies and editing guide materials. Wolf for use of their materials in sections 2 and 4. national and international health. projects and agencies who have shared their work with us. The authors are grateful to all those people. we wish to thank Tuuli Sauren for her creative design work. and through a review of relevant literature. The guide writing group wishes to thank Warren Feek. education and development advocates and agencies that are working on and/or planning to take action to enhance people’s health literacy. the guide builds on the interactive health literacy framework rst presented by Ruth Parker at the US Institute of Medicine Roundtable on Health Literacy in 2009. Deborah Heimann and the whole team of CI for their support to this project and to the many others who use the CI site as a prime source of health communication information and exchange. Kara Jacobson and the International Council of Nurses for use of their pictures and posters.

ICN and the Liverpool Healthy City Project for their support to this project. Updates will be posted on the WHCA website: www. For Part 3 the development team is particularly interested in gathering evidence and case studies about the relationship of Health Literacy to Health Inequities and identifying useful interventions which address both of these challenges. particularly in the policy making arena. The guide has been developed through a process which has involved all the authors and their extended networks and continues to be a work in progress. The action framework presented in this Advocacy Guide serves as an excellent ‘tool’ and resource for enhancing e orts of those working on health literacy. We are grateful to David Benton and Linda Carrier-Walker from the ICN for their support of the development of the Advocacy Guide and for permission to reprint it here.Part 2 of the WHCA Health Literacy Guide series also includes the ICN Advocacy Guide as an annex. In addition to sharing our approaches with you. Johnson and Johnson. For the Guide Development Team Franklin Apfel 7 .org. we would like to invite readers to give us some feedback about whether the conceptual approaches described herein make sense in your contexts and to contribute case studies for inclusion in future editions of the guide. IAPO. we wish to thank WHCA. Please forward any comments to: franklin@whcaonline.org.whcaonline. Finally. We also thank Scott Ratzan for allowing us to reprint his health communication glossary.

© Photo by Steve Turner Poor health literacy skills are very common. Based on studies in several countries one can assume that 20-50% of the people in this picture will have trouble obtaining. 8 . understanding and using health information.

numeracy and the ability to communicate and question. educators. Poor health literacy has been shown to be a major public health problem in all countries where the issue has been studied. It is best addressed when information. policy makers and advocates who wish to improve individual and population health literacy. This Health Literacy Action Guide summarises current knowledge on why health literacy is important and how we can improve health literacy. Very large numbers of people in both developed and developing countries have poor health literacy skills. While poor health literacy skills are common and have been found to be a signi cant determinant of health. for example. make health-related decisions. WHAT IS HEALTH LITERACY? Health literacy refers to a person’s capacity to obtain health information. WHY THIS GUIDE? Poor health literacy is not just an individual problem but a systemic societal problem. community and governmental policies and structures do not adequately serve needs. to date there has been little systematic corrective action in 9 .SUMMARY Health Literacy at a Glance WHO IS THIS GUIDE FOR? This guide is for health professionals. People’s health literacy shapes their health behaviours and choices—and ultimately their health and wellbeing. more hospitalisations and higher health care costs. WHY IS HEALTH LITERACY IMPORTANT? There is strong scienti c evidence that shows that poor health literacy leads to less healthy choices. education and all types of communication from health and other services are aligned with the skills and needs of their users. about 90 million adults—half of the adult population—are thought to lack the literacy skills needed to e ectively use the US health care system. Health literacy skills include basic reading. writing. sort through con icting information. riskier behaviours. process it and act upon it. poorer health. Health literacy also requires functional abilities to recognise risk. In the US. navigate often complex health systems and ‘speak up’ for change when health system.

agencies and systems do to strengthen health literacy? This section looks at interventions in six key systems and settings: health systems. integrate and act on health information. Section 4: What can individuals. workplace and policy-making arenas. Section 2: Why is health literacy important? This section looks at the size of the problem and brie y reviews evidence of its impact on health. wellbeing and health system costs. media health information marketplaces. addressing six key questions: Section 1: What is health literacy? This section de nes health literacy and describes the demands and complexities of di erent systems and settings. home and community. home and community settings. as well as the health literacy ‘friendliness’ of the systems and settings where health information is obtained. Case studies. workplaces and policymaking arenas at all levels. ORGANISATION OF THE GUIDE 6X6 The guide is organised into six sections. 10 . Actions and structures within these settings may either facilitate or be a barrier to the development and expression of health literacy skills. media marketplaces. education. This guide provides a framework for such action and identi es useful interventions that people and agencies can take to strengthen health literacy. are included that describe a wide variety of interventions in each of these six areas. SIX KEY AREAS FOR INTERVENTIONS This guide focuses on action in six key systems or settings: health and education systems. Meeting in Geneva in July 2009. Section 3: How is health literacy measured? This section looks at measurement tools for assessing individual health literacy skills and competencies. the United Nations Economic and Social Council (ECOSOC) acknowledged this de ciency and called for the development of health literacy action plans at all levels. from all six WHO Regions.most countries. which shape people’s ability to access.

This section suggests steps that can be taken to develop systematic approaches to enhancing health literacy. This section identi es messages to key stakeholders and describes speci c health advocacy communication strategies. 11 . investment and action to strengthen health literacy? Messages to Key Stakeholders. Section 6: What should be the components of a national or local health literacy strengthening action plan? Building national and local health literacy action plans.Section 5: How can we advocate for more attention.

” (Ratzan & Parker 2000. Skills/Abilities HEALTH LITERACY Demands/Complexity Figure 1. interpreted and used (see Figure 1). including consent forms. in Hernandez 2009. These factors include both user and provider communication skills and knowledge of health topics. for example. and web-based information sources are written in language above the average reading ability of most of their adult populations (IOM 2004). culture and the speci c characteristics of the health care. require knowledge or a language level that is too high for the user. When these services or systems. therefore.91) Over 300 studies in the US and UK. p. Health literacy ‘capacity and competence’ varies by context and setting. education and information systems more health literacy friendly. It is also de ned by the interaction (or alignment) of these skills with the demands and complexities of the systems within which information is sought. interpret and understand basic health information and services and the competence to use such information and services to enhance health. has to focus on both improving individual skills and making health service. Health Literacy Framework (Parker R. Action to enhance health literacy. Health literacy friendly 12 . for example. health will su er. demonstrate that printed materials. It is dependent on individual and system factors. public health and other relevant systems and settings where people obtain and use health information (Healthy People 2010). IOM 2004) Health literacy ‘capacity and competence’ is not just determined by an individual’s basic literacy skills.SECTION 1: WHAT IS HEALTH LITERACY? This guide defines health literacy as “The capacity to obtain.

If you were looking for the pharmacy.systems and settings are ones which actively measure. monitor. consent forms and other written materials are clear and understandable. evaluate and adjust their communications to meet the needs (and skills) of their users. SYSTEM DEMANDS AND COMPLEXITY System Demands and Complexity This guide identi es six key systems and settings—‘domains of in uence’—which help shape both the development of health literacy skills and their expression (see Box 1). does this sign help or confuse? © Photo by Kara Jacobson 13 . Those with poor health literacy skills are particularly challenged. Health care and other agencies can help by ensuring their signposting . Navigating increasingly complex health systems is a challenge for all users.

alcohol and fast food 14 . Media marketplaces — For many people. select appropriate pathways of care and engage in selfcare. Adult participation in learning may also be bene cial for the next generation in terms of improving their chances of learning and health outcomes. They can use the same approaches to help people make healthier decisions when choosing goods and services. The development of such literacy skills should be a priority and included in all school and adult education programmes. identifying good practice and advocating for more e ective policies and interventions. with particular emphasis on parental involvement in early years education. Health systems can also advocate for and shape the ‘health literacy friendliness’ of other systems and settings. Health systems can be made more health literacy friendly in a variety of ways. this can help align system demands to user skill levels and improve user ability to access health systems. If done appropriately. signs and letters—can be made more accessible and understandable. the impact of the choices they make and where to nd reliable information to support decision-making. behaviours and choices.BOX 1 : SIX DOMAINS OF INFLUENCE ON HEALTH LITERACY (adapted from Kickbusch & Maag 2008) Health systems — Health systems play a major role in developing individual and population health literacy skills. Workers may be trained to recognise the speci c needs of users and assist them in navigating systems. Educational systems — Schools and other formal and informal educational establishments play a major role in developing literacy skills and fostering literacy in all countries. Literacy improves employment prospects (with associated health gains). media marketplaces are a main source of health information. These marketplaces shape people’s health perceptions. Information—such as forms. They help children and adults to learn about what in uences their health. importantly. either by helping individuals to move out of unemployment or through aiding progression in the labour market. with interested parties using sophisticated communication techniques to sell their products and ideas. assess risks. This could also serve to counteract the negative in uences of industries—tobacco. Public health advocates need to learn from commercial advertisers and marketers. Learning may have bene ts in terms of improving attitudes to and competencies for engaging in positive health behaviours and making best use of health services. They can do this by raising awareness of the negative health consequences of weak health literacy skills and. Commercial and political interests often dominate.

health-protecting and disease-preventing behaviours. Health-promoting work environments go further with speci c health and wellbeing policies and dedicated support for employees to address lifestyle choices. They help to shape functional health literacy skills related to product and service choices. People develop their health literacy over time and from a wide variety of sources. and e orts to address the social determinants of health which shape di erential access to information and care across a social gradient. Families. 15 . demand–control. BUILDING INDIVIDUAL SKILLS Skills and Abilities Building health literacy skills and abilities is a lifelong process.and family care. self. as well as ‘alternative therapies’. available support services and rst aid. as it is both inaccurate and an emotionally loaded term which all too often causes stigma and shame.companies—which glamorise and promote unhealthy products and lifestyles. peer groups and communities can be primary sources of health information. Workplace settings — By providing clear and consistent health messages to employees. employers can help prevent accidents and lower the risk of industrial or occupational diseases. and no-one is ever totally health literate (or illiterate1). national and regional—shape the social and structural factors which determine health literacy and health. such as alcohol and drug use and stress factors. The engagement of citizens in policy making processes is a fundamental democratic principle. e ort–reward in the workplace and issues related to achieving an appropriate work–life balance. Policy making arenas — Policies at all levels—institutional. including job security. the development of patient-centred care. 1 This guide intentionally avoids use of the term ‘health illiteracy’. Home and community settings — People are called upon to make daily health-related decisions in their homes and communities. These may include their family and work settings. These sources can provide important information about health-promoting. A key trend in many health system reforms is the empowerment of patients. community.

hopelessness or helplessness.primary.g. writing. community and governmental policies and structures do not serve needs. health providers. 16 . BOX 2 : HEALTH LITERACY FOUR INDIVIDUAL LEVEL SKILL SETS Health literacy related skills can be categorised as: cognitive (knowledge).. Health literacy skills (see Box 2) include basic reading. such as support groups to assist in quitting smoking. take health-related decisions. Cognitive skills include general literacy. live with uncertainty. and take action to express opinions and make changes at institutional. sort through con icting information. secondary. lobbying and organising campaigns. Health literacy also requires functional abilities to recognise risk. Existential skills include the ability to make sense of a life with illness. asking for and receiving information. Advocacy skills include critical competencies to analyse health information. self-care. numeracy and the ability to communicate and question. and interpersonal communication and negotiating (e. navigate often complex health systems and ‘speak up’ for change when health systems. numeracy. community and political levels. print and on-line health information. deciphering prescription drug instructions. system ‘navigation’ ( nding the way to services or negotiating complex systems). behavioural (functional). the media. and avoid descending into depression. understand the political and economic dimensions of health. higher and adult education. self-pity. It includes the ability to grieve and to prepare for and die in a peaceful way. taking action to promote new or change existing policies. costs and bills). advocatory (proactive) and existential (spiritual). ling complaints or understanding health care charges. as well as the ability to understand written and oral information given by health care professionals. and a wide variety of community-based resources. information gathering skills and analysis. This may include ‘speaking up’ for oneself and others. Behavioural skills include more interactive literacy and social skills used to make health risk assessment and lifestyle choices. lling in forms. These skills are used for health-related actions like reading health warnings and food labels.

But no one is ever totally health literate. Even highly educated individuals may nd systems too complicated to understand.Health literacy is best viewed as a dynamic continuum of skills. The need for other skills arises when new behaviours are required: for example. People’s needs change over time as they face di erent health challenges. disease care or rehabilitative information is being sought. 17 © Photo by Kara Jacobson . climate change related heat waves and oods. Everyone at some point needs help in understanding or acting upon important health information. Times of illness often provide ‘teachable’ moments and opportunities to enhance health literacy skills and knowledge. especially when made more vulnerable by poor health. to respond to the emergence of new health threats like pandemic in uenza. Some of these changes are predictable based on life stages or whether preventive.

asthma and diabetes. A review of the health impacts of education found low educational level was associated with an increased risk of death from lung cancer. Australia and Canada surveys have shown poor health literacy skills in 20-50% of the population. life expectancy and having fewer children (Wils 2002). but it can reduce the probability and the depth of the poverty experienced (Wils 2002). Even in countries 18 . POOR LITERACY SKILLS AND LOWER EDUCATIONAL STATUS ARE ASSOCIATED WITH POORER HEALTH AND WEALTH Literacy—along with primary and secondary school attendance—is positively correlated to personal income.SECTION 2: WHY IS HEALTH LITERACY IMPORTANT? 1. such as Norway. such as recent immigrants (Kutner et al. The number of years spent in formal education have been found to be inversely related to age-adjusted mortality in many countries. dementia. 2006). 2. Household surveys of developing countries consistently nd that those households headed by illiterate or less educated individuals are more likely to be poor. POOR HEALTH LITERACY SKILLS ARE VERY COMMON In the United Kingdom. Health education a ects health outcomes in many ways. those who are poor. The majority of these adults are native-born English speakers. US studies estimate that 90 million adults—almost half of the adult population—may lack the literacy skills needed to e ectively use the health system. economic growth. minority populations and groups with limited English pro ciency.025 percent higher annual GDP growth rate in the subsequent 25 years. depression. United States. There is also a positive relationship between education and income (Cassen 2002). cardiovascular disease and infectious diseases. those who have lower educational levels. female empowerment. Literacy levels were found to be lower among the elderly. stroke. Enhancing a mother’s educational level reduces infant and child mortality in developing countries (Ratzan 2001). A National Consumer Council survey in the United Kingdom (NCC 2004) found that one in ve people had problems with the basic skills needed to understand simple information that could lead to better health. as well as a number of illnesses including back pain. England and Hungary (Ratzan et al. Simple literacy may not be su cient to completely erase the possibility that a household is poor. 2000). A global study by Barro (1991) showed that each percentage increase in primary school enrolment resulted in a 0.

And higher educational level has been related to more ideal body weight in Europe. Russia and China (Molarius et al. Clear links between education level and health behaviours have been shown. Higher educational levels are related to decreases in smoking prevalence and higher rates of smoking cessation in Europe (Cavelaars et al. Health systems may be very advanced or very basic in their resources. Having a higher level of education is associated with consuming more fruit.where the average life expectancy for all has increased. 2008). 1999. 2000 cited in Higgins et al. 2008). Those educated to Level 2 or below are 75 per cent more likely to be a smoker at age 30 than a similar individual educated to degree level or higher (Wilberforce 2005). Consider the impact of limited health literacy for those in rural areas. 19 © Photo by Kara Jacobson . The likelihood of becoming a smoker is increased among less educated populations. vegetables and bre and less fat (Johansson et al. the gap between those with the highest and lowest levels of education has remained (Higgins et al. 2000). 2000). Fraser et al.

1998b). to have poor knowledge about a wide variety of chronic health conditions. People with limited health literacy have less health knowledge. Ruth M. health behaviours and compliance with medication and self-care regimens (Baker 1999. 2 This section is adapted from Health Literacy: A Brief Introduction by Stacy Cooper Bailey. 1998a. Scott Ratzan. 20 . People with low health literacy skills demonstrate poorer self-management skills. Worse self-management skills. MD. Jacobson. for example. Michael S. MD MPH (ICN 2009). Parker. Wolf. IOM 2004).1998b. POOR HEALTH LITERACY IS ASSOCIATED WITH MANY ADVERSE HEALTH OUTCOMES2 Health literacy has been directly linked with acquisition of health knowledge. diabetes and congestive heart disease. 2005. BOX 3 : HEALTH OUTCOMES OF WEAK HEALTH LITERACY • • • • • • • • • • • • Poorer health choices Riskier behaviours Less use of preventive services More delayed diagnoses Poorer understanding of medical conditions Less adherence to medical instructions Poorer self-management skills Increased risk of hospitalization Poorer physical and mental health Increased mortality risk Greater health care costs Higher health costs Less health knowledge. Wolf et al. HIV infection and diabetic patients (Williams et al. including asthma. PhD MPH. Kara L. hypertension. 2004. DeWalt et al. This has been studied in asthma. A person with low health literacy is likely. Empirical data supports an association between limited health literacy and numerous adverse health outcomes (see Box 3). 1998a. MPH. MPH CHES. access fewer preventive services and have poorer self-management skills (Williams et al.3.

Baker et al. 2002). Sixty-three percent of the additional costs attributed to low health literacy may be borne by public programmes (Friedland 1998). In the case of people with diabetes. 2006b. less able to achieve tight blood sugar control and reported higher rates of retinopathy as the result of poor self-care. A low level of health literacy can lead to inappropriate use of the healthcare system. Patients with limited health literacy have higher hospitalisation rates and a greater number of emergency room visits (Mancuso & Rincon 2006. reported worse physical and mental health and greater di culties with daily activities and limitations due to physical health (Wolf et al. by the National Academy on Aging Society. People with low health literacy have been found to be twice as likely to self-report poor health. race and markers of economic deprivation (Baker et al. patients were less likely to know the appropriate dosing instructions and dietary restrictions. 1998). Poorer health. even after adjusting for age. People with low health literacy had a higher prevalence of diabetes and congestive heart failure. Wolf et al. Health literacy has been found to be a signi cant. Higher mortality. Higher hospitalisation rates. demonstrate proper administration techniques and showed poorer adherence to medication. HIV-infected patients with limited literacy skills have been found to demonstrate less control of their infection and were less likely to have an undetectable viral load. 2005). Schillinger et al. 4. Sudore and colleagues (2006) reported that in elderly people. 2002). (2007) found low health literacy to be signi cantly and independently associated with higher mortality risk in elderly people (see Graph 1). Similarly. reduce e ectiveness and e ciency of health care interventions or increase the likelihood of unhealthy lifestyles.Kalichman et al. gender. These studies showed that patients with lower health literacy skills were less able to identify medications. Baker et al. 2002). independent predictor of average blood sugar in people with diabetes (measured by serum haemoglobin A1c) (Schillinger et al. One analysis in the US. HIGHER HEALTH CARE COSTS Health literacy has a strong economic component. estimates that low health literacy costs the US health care system $30-$73 billion annually (1998 dollars). low health literacy was associated with greater all-cause mortality risk compared to those with adequate health literacy. 21 . 1999.

Graph 1: Literacy and Mortality Risk (Baker et al. 2007) 22 .

. measures are needed to be able to assess the health literacy friendliness of systems and settings as both a guide to quality improvement and as a way to hold agencies responsible for making health information understandable and actionable (Clancy in Hernandez 2009. whether individuals are competent to access services. to determine areas where interventions may be appropriately targeted (Hernandez 2009). Secondly. and find relevant information). including oral understanding. BOX 4 : MEASUREMENT TOOLS IN DEVELOPMENT PATIENT ASSESSMENT The Consumer Assessment of Healthcare Providers and Systems (CAHPS) is a set of standardized. 23 . medications. health knowledge and navigation skills (i. health promotion and forms. The goal is to gather data to help health providers improve communication skills and patients’ health literacy.SECTION 3: HOW IS HEALTH LITERACY MEASURED? Most health literacy measures in current use tend to assess reading skills (word recognition or reading comprehension) and numeracy rather than measure the full range of skills needed for health literacy. but also provides reports that consumers can use to make decisions about their choices in health care. The CAHPS project not only develops survey instruments.edu/catalog. The Roundtable pointed to a variety of tools in the pipeline which may help enhance capacities in this area in the near future (see Box 4). evidence-based surveys (in the US) for assessing patient experiences with their health care encounters.nap. p.9).php?record_id=12690. A tool is being developed that will be used to measure patients’ perspectives on how well health care professionals communicate health information. current assessment tools are still weak. handle transitions. tests. Although this is an area of active research. There is a need to develop tools that can measure the ability to use health information to attain and maintain good health. The report can be downloaded from http://www. The 2009 Institute of Medicine Roundtable on Health Literacy Measurement looked at measures of population health literacy. through geo-mapping and other techniques. The project has also started to develop provider reports that can be used by providers to identify areas for quality improvement.e. It will include measures on: • Oral communication regarding health problems and concerns.

gov/nonmedicalprogrammes/healthed/PDF/PtEd_REALM_ Examiner_WordList. in Hernandez 2009.• • Written communication regarding medications and tests. p.PDF). The plan is to eld test the item set in the fall or winter of 2009 with an expected release date of spring 2010 (Ocampo B. 61-66: ninth grade and above).ihs. and • Patient-provider relationship. TOFHLA and S-TOFHLA Comprehension tests—such as the Test of Functional Health Literacy in Adults (TOFHLA) and the Short Test of Functional Health Literacy in Adults (S-TOFHLA)— were designed to provide a broader assessment of functional health literacy. 24 . 45-60: seventh and eighth grade.81). hospital forms and prescription bottles are also used to assess a patient’s numeracy skills. Techniques utilized by health providers to ensure patient comprehension of health information (commonly referred to as “teach back methods”). 19-44: fourth to sixth grade. Patients are asked to read a list of 66 increasingly di cult medical terms. brief (administered in two to three minutes) and useful for pro ling patients’ reading skills (see http://www.1 CURRENT MEASUREMENT TOOLS ABILITIES INDIVIDUAL SKILLS AND REALM The Rapid Estimate of Adult Literacy in Medicine (REALM) is a word recognition test. and (3) a standard hospital consent form. These are: (1) instructions for the preparation for an upper gastrointestinal tract x-ray. S-TOFHLA uses only the rst two passages. appointment schedules. TOFHLA uses three passages of prose to assess reading comprehension. The number of correctly pronounced words is subsequently related to approximate grade levels of reading (0-18: third grade and below. 3. They take into account reading comprehension and quantitative literacy (numeracy). REALM is simple. For both the TOFHLA and the S-TOFHLA. such as instructions for taking medication. Each of these passages has about every fth word eliminated and the respondent is asked to choose the most appropriate word to complete the sentence. (2) the patient rights and responsibilities section of a selected application form.

As with the TOFHLA. there are English and Spanish versions of the NVS. TOFHLA and S-TOFHLA have been shown to be reliable and valid measures of functional health literacy. and may be a practical alternative to more complex measures. “How con dent are you lling out medical forms by yourself?” was identi ed as the best predictor of limited health literacy skills when validated against REALM. One study evaluated a series of questions as potential predictors of health literacy as measured by the S-TOFHLA. NVS The Newest Vital Sign (NVS) test is a health literacy screening tool administered in three minutes. The concept implies that health literacy is a vital sign. there is limited experience with the NVS in the published literature. Although TOFHLA and S-TOFHLA are the primary instruments by which reading comprehension and numeracy skills are measured. less intrusive. e orts have been made to identify simple screening questions that avoid the perception of literacy testing. just as heart rate and blood pressure are. Currently. Three questions emerged from the analysis as best single-item screening measures: • • • How often do you have problems learning about your medical condition because of di culty understanding written information? How con dent are you lling out medical forms by yourself? How often do you have someone help you read hospital materials? In a follow-up study of the three questions. and obtaining nancial assistance for both of these tests. Because of the shame associated with limited health literacy. the time—22 minutes for the TOFHLA and 12 minutes for the S-TOFHLA— and complexity have limited their use to research within health care environments. One-Item Screening Measures While researchers may choose to use one of the above tools. It requires users to read a standard nutrition label from a carton of ice cream and answer a series of six questions. Using a one-item screening question during individual encounters is simple. The number and type of quantitative tasks vary according to the version of the TOFHLA used.blood pressure and glucose monitoring. 25 . it may be necessary for practitioners in a busy health care environment to simplify the measurement of health literacy.

It evaluated patient understanding of medications and adherence to prescribed regimens (Jacobson 2008). physical environment. evaluation of materials. measurement. and lessons learned. workforce. web-based survey. the assessment tools: • Raise pharmacy sta awareness of health literacy issues. paperwork and This assessment tool can be accessed at: http://www. One such tool is shown in Table 1 (Matthews & Sewell 2002). which activities people associate with health literacy.ahrq.3. Additionally. whether organisations pilot test materials for comprehension or cultural competence. the degree to which organisations follow health literacy principles in their programmes. researchers have used assessment tools to evaluate how well a health service meets the needs of patients with limited health literacy skills. The evaluation tool is a 5-minute. technology. • Detect barriers that may prevent people with limited literacy skills from accessing.2 MEASURING THE DEMAND AND COMPLEXITY SIDE HEALTH LITERACY INTERVENTIONS Some researchers have begun developing tools to evaluate the health literacy friendliness of systems.gov/qual/pharmlit/. Conducting an organisational assessment may also provide a baseline assessment prior to implementing an intervention. 15-question. It collects information on whether health literacy is considered in programme development and service activities. comprehending and using health information and services provided by the organisation. One study applied an assessment tool to a pharmacy setting. 26 . Jacobson identi ed nine key elements of an organisational health literacy intervention: management. care process. • Identify opportunities for improvement. System assessments In addition to activity/intervention analysis.

to instruct and inform Test for reading levels in clients Use interactive computer or kiosk 27 . provider and organisational perspectives of health literacy. FREQUENCY OF UNDERTAKING HEALTH LITERACY RELATED ACTIVITIES Regularly Sometimes Do not do Don’t know No response Simplify language and check readability Reformat materials to make them more user-friendly Con rm patient/client understanding Train agency. Evaluating these elements provides a comprehensive audit to assess congruence between patient. or healthcare providers about health literacy Use audiovisual aids Provide materials in multiple languages Use pictographs. TABLE 1. sta . and alignment. etc.written communications. cartoons. culture. A follow-up assessment allows evaluation of the intervention’s impact on an organisation’s accessibility to those with limited health literacy.

blood sugar. The patient takes a daily aspirin (age 40 and older) Clinics are then given a D5 score by a designated agency based on the percentage of their patients achieving the D5. tobacco use.3. the scorecard might measure knowledge of key facts needed to live a healthy life. including a literacy score (from one of the above measures). Alternatively. body mass index. blood pressure. etc. Blood sugar. immunisation status. The individual scorecard would identify a few key health indicators that are associated with a healthy physical and mental state.org/index. The patient is tobacco-free 5.3 SCORECARDS The WHCA Action Guide Group has proposed the development of health literacy scorecards for individual and system monitoring of literacy.thed5. is less than 100 3. Blood pressure is less than 130/80 2. BOX 5 : THE D5 DIABETES CONTROL SCORECARD The D5 represents the ve goals needed to reduce a patient’s risk of heart attack or stroke when he/she has diabetes. sense of social control. A1c. Bad cholesterol. These might be modelled on the D5 Diabetes Control Scorecard used to assess diabetes control in the US and other countries (see Box 5). A patient achieves the D5 when all ve goals are met: 1. A health literacy score might include a mix of physical. LDL. Individuals could rate themselves against a standard and agencies would be measured on how many of their users successfully achieved the score parameters. wellness self appraisal. cholesterol. Ref: http://www. exercise measure.php?p=view_clinics 28 . is less than 7% 4. mental and social wellbeing measurements.

Social Capital Links have also been made between health literacy and the concept of social capital. Coleman 1988). A population health literacy index which measures a person’s skills and the health literacy friendliness of key systems and settings could provide a useful and unique picture of population health competence. Social capital refers to the features of social organisation—such as networks. including geo-mapping using census data and literacy measures (Lurie in Hernandez 2009. (Hanchate in Hernandez 2009. The is the rst international survey of health literacy. WATCH THIS SPACE The European Health Literacy Survey is a project which will measure health literacy in various European regions and cultures and create awareness of its societal and political impact in Europe. p. Kickbusch 2002).4 A MEASURE OF HEALTH DEVELOPMENT Ratzan (2001) and others have proposed that population health literacy should be considered a measure of health development. The IOM Roundtable 2009 heard several presentations of approaches to population health literacy measurement.66) and another imputing health literacy based on patient sociodemographic indicators such as age. etc. Such an index could provide a new type of health index for societies that complements measures such as the disability adjusted life years (DALYs) and morbidity and mortality data (Ratzan 2001. education. p.61). First results are expected at the end of 2010. This is an area for future research. A health literacy index may also serve as a measure of social capital as regards health.3. yielding datasets for European and national valorization as well as in-depth international analyses. norms and social trust—that enable participants to act together more e ectively in pursuing shared objectives (Putnam 2000. 29 .

and assess the ease and quality of various treatment options. 3 The adoption of a business approach to health reform. elderly and unemployed. AGENCIES AND SYSTEMS DO TO STRENGTHEN HEALTH LITERACY? Health literacy is a society-wide responsibility—it is everybody’s business. Economic values inherent in an industrial and/or for-pro t approach have in many places replaced fundamental commitment to access and care for many vulnerable persons. race and ethnicity. socioeconomic status. gender. marketing. Native language. Navigating such health care systems.1 HEALTH SYSTEMS Complexity of health systems Advances in medical science. procedures and processes. with their numerous layers of bureaucracy. reduces the amount of contact time and opportunities for information exchange between providers (especially doctors) and patients. Useful interventions can be taken in the six domains of activity identified earlier. Time management of health professional visits. A NOTE OF CAUTION While much can be learned from the activities of others.SECTION 4: WHAT CAN INDIVIDUALS. this guide is not promoting the wholesale adoption of any intervention. These changes all make high health literacy demands on their users. While health literacy is indeed the product of many societal actors. can be a challenging task. has often led to a re-orientation of priorities. as well as facilitating the change and development needed in other sectors and settings. guided by e ciency outcome measures. the poor. and the plethora of health information sources available through electronic channels—all in uence health literacy.g. make a decision about treatment depending upon the severity of illness. along with mass culture—news publishing. 4. People often have to choose a provider. for example. advertising. health care and public health workers have a special responsibility in this area both to enhance their own communication capacities and those of the systems in which they work. changes in the delivery of care and the adoption of a business approach to health reform in many countries3 have resulted in less accessible and more complex health systems. e. 30 . It is important that any de nition of health literacy recognises the potential e ect of cultural di erences on the communication and understanding of health information (Nutbeam 2000).

Ruth M. Kara L. Michael S. MPH. 31 . Scott Ratzan. 2000). Navigating health systems 4. Technology-based communication techniques 3. cited in IOM 2004). MD MPH (ICN 2009).1.1 Provision of simplified/more attractive written materials4 Health information materials and o cial documents—including informed consent forms. Doak & Root 1996). or a compass for what may be a di cult and unpredictable journey (Kickbusch & Maag 2008). Wolf. Patients. and from public to private providers (IOM 2004). Health Literacy enhancement interventions Health system interventions to improve individual and population health literacy can be divided into four categories: 1. Most of the approaches in this category involve producing patient information materials that are written with simpli ed language. Provision of simpli ed/more attractive written materials 2. Table 2 describes some key techniques (Doak. have improved format (for example. social services forms and public health and medical instructions—often use jargon and technical language that make them di cult to use (Rudd et al. Their health literacy can be thought of as the currency needed to negotiate the system (Selden et al. 4 This section is adapted from Health Literacy: A Brief Introduction by Stacy Cooper Bailey. studies suggest that health information is often more di cult to comprehend than other types of information (Root & Stableford 1999). 2000. PhD MPH. Parker. MPH CHES. An adult’s ability or inability to make these decisions and navigate these systems is a re ection of systemic complexity as well as individual skill levels. clients and their family members are often unfamiliar with these systems. more white space and friendlier layout).They also have to move from community settings to hospitals. or use pictograms or other graphics. Moreover. Training of educators and providers 4. MD. Jacobson.

Print in large. Arial) with a minimum font size of 12 pt. It should be used sparingly to di erentiate key sentences or phrases from the rest of the text. Words that are commonly used in conversation are the best to include in health messages. Consider grouping information under common headings to promote understanding. SansSerif font Include su cient white space Select simple words Provide information in bulleted lists Highlight or underline key information Design passages to be action and goal oriented Group and limit instructional content 32 . Information provided in lists is often easier and faster for patients to read and comprehend. and ideally less than 10 words. and should provide readers with a clear explanation of the purpose of the written material. Bolding and highlighting phrases or words can draw attention to essential information for patients. text should be left-justi ed for easy reading. Use of all capital letters should be avoided. Written passages should be action and goal-oriented. only the rst letter of words in text should be capitalized. In general. Large margins and adequate spacing between sentences and paragraphs will provide su cient white space and prevent a document from appearing to be solid text. Passages should clearly de ne what actions should be taken by the reader and why these actions are necessary. Bullets help to separate information from the rest of the text.g. Sentences should be written in a conversational style. TECHNIQUES TO SIMPLIFY PRINT MATERIALS Technique Write in short sentences Explanation Short sentences tend to be easier to read and understand for patients.TABLE 2. Place key information at the beginning of a paragraph and be sure to limit the amount of instructional content that is given to what is essential for the patient to know and understand. Text should be written in Sans-Serif font (e. Sentence length should be less than 15 words. Shorter words tend to be easier to understand and more familiar to patients.

High income countries—which have 16% of the global population and 7% of the global burden of disease—have 94% of internet hosts. age and background of the patient population and should be simple.1. 33 . Low-income countries. Visual materials are useful to teach patients about health conditions that cannot be seen easily— for example.Use active voice Avoid unnecessary jargon Information written using active voice is easier to understand and more likely to motivate the patient to action. Medical terminology should be used as infrequently as possible and. 2001). However. It is helpful to use visual aids in print material and during clinical encounters to help patients remember and process health information. These technologies facilitate health literacy by providing people with a choice of information that can be accessed in their own time and allowing them to put their own information on the web. Utilising visual aids. Photographs and visual materials depicting how to correctly engage in health activities are useful methods of transferring health information to patients. One study demonstrated that people who listened to medical instructions accompanied by a pictograph remembered 85% of what they heard in contrast to 14% for patients who did not receive a visual aid (Houts et al. Unnecessary jargon can be distracting to patients and often provides little information. All print materials should be simpli ed regardless of literacy level of target group. if used. mobile phones and other telecommunication advances allow for instant local–global linkages and cost-e ective information transfer and intelligence gathering. Access to internet and mobile phone technologies re ects social and economic di erences between and within countries. should always be clearly de ned and explained to the patient. cholesterol in the blood vessels—and to demonstrate how to follow steps to complete a task. Visual materials should be tailored to re ect the culture. with 84% of the population and 93% of the burden of disease. 4. Studies have shown that the majority of patients prefer to have print materials provided in clear and concise formats like those described above.2 Technology-based communication techniques The internet. recognisable and clear. the current digital divide is more dramatic than any other inequity in health or income. have only 6% of internet hosts (Dzenowagis 2004).

age. audio-visual aids (for example videos. On the provider side. One widely-used type of technology-based communication technique is telephone-delivered interventions (TDIs). A systematic review of technology-based communication techniques shows that such decision aids improve knowledge. pers. DVDs. They will then receive. For those with poor literacy. and the extent to which subsequent calls take into account information from other encounters with the individual (IOM 2002).Interventions A wide variety of initiatives have tried to enhance access to technologies and address the digital divide. on a regular basis. reduce decisional con ict and stimulate patients to be more active in decision-making without increasing anxiety (O’Connor et al. TDIs can vary by the type of service provider and the extent to which the call is scripted. 1999). One example of this is in India. interactive games and ‘mobile health’ (M-health). These initiatives include the introduction of low-cost hardware. the creation of ‘staging posts’ where local intermediaries interpret information for others.). etc. Such technologies not only address information access issues for users but can be useful to institutions and governments as an interactive way of gathering feedback on the friendliness of services and information access. New communication technologies o er educational opportunities that help people to be more involved in their health decisions and treatment. They may also vary depending on characteristics and responses of the individual. gender. call-in services are provided (Stross & Ratzan 2009. computerised pro les of individual patients or target populations can be used to tailor existing materials to t speci c situations. spoken word). text messages with useful information and reminders about prenatal check-ups. ‘Baby Centre’ is a service programme to which mothers can SMS their due dates to a central information centre. ‘Mobile health’ is working on capturing the power of SMS messaging to support literacy. These technologies include web-based learning. and training programmes for users. in which counselling and health reminders are delivered using the telephone or through text messaging. This can be done using computer-based algorithms that take various patient characteristics into account. ethnicity. scans. comm. These characteristics might include language. language-speci c mirror sites (where web pages are regularly translated into local languages). 34 .

who are often under-represented in clinical research (IOM 2004). Training works best when it is informed by users with limited health literacy. help the patient to communicate with their doctor and be available to listen to fears and concerns.reading ability. 4. Navigators can be community health workers. childcare or transportation problems.4 Training of educators and providers Providers should be trained to communicate more e ectively to help them care for patients with limited health literacy. 35 . 1995). interpret health information and assist in obtaining access to services. increase adherence to medical treatment. provide education about the disease and its treatment. Training should focus on improving clinician communication skills and understanding of cultural sensitivities (Frankel & Stein 2001). They can be trained to provide health education. lay or professional. the need for improved clinician skills in fostering mutual learning. and the needs and goals of the patient at that time (Revere & Dunbar 2001). particularly at institutional and community level.3 Navigating health systems Many health systems. reduce missed appointments and lower health system costs (Freeman et al. Furthermore. Such services have been found to improve health outcomes. collaborative goal-setting and behaviour change for chronic disease patients has been identi ed (Youmans & Schillinger 2003). They may also translate medical jargon into understandable language. have tried to make their services more easily navigable by using case managers and navigators to help patients. They help patients to overcome fear and emotional barriers by providing support. communication and medical system barriers. The navigator can act as the patient’s advocate in the interval between screening and further diagnosis or treatment. health literacy level.1. 4. assisting with practical issues such as paperwork for nancial support. Navigators have been shown to help alleviate nancial. partnership-building. paid or volunteers. but their role is to help patients through the health or social care system.1.

who use evidence-based algorithms. For diabetes and anticoagulation. The teaching techniques are used in a one-on-one interaction with the patient during clinic visits and feature: • A teach-back method in which the patient teaches the content back to the educator • Practical skills rather than complex physiology • Written educational materials designed for low-literacy users that the educator reviews with the patient • Follow-up telephone calls and quick visits by the educator when the patient returns to the clinic. are led by clinical pharmacist practitioners and trained health educators. 36 . Programmes may also include direct instruction and role-play exercises. The programmes.BOX 6 : CASE VIGNETTE CHRONIC DISEASE MANAGEMENT PROGRAMME IOM 2004 Researchers and practitioners at the University of North Carolina in USA have developed several chronic disease management programmes that are designed to identify and overcome literacy-related barriers to care. a computerised patient registry and literacyindependent teaching techniques to facilitate e ective self-care and assure receipt of e ective services and medications. the programme organisers have systematically measured literacy as well as relevant health outcomes. that serve to reinforce the education • A collaborative learning environment based on sensitivity to the role of literacy in communication with patients In each area. completed studies have found that these programmes can o set the adverse e ects of low literacy. which include interventions for diabetes. It might provide techniques to improve communication with patients who have limited health literacy skills. A typical training programme might introduce providers to the concept of limited health literacy in patient populations. in which the provider practises counselling the patient (in this case the trainer) with an observer providing feedback (Jacobson 2008). chronic pain and anticoagulation. pointing out the implications for the delivery of healthcare services. heart failure.

2006). terms and concepts should be clari ed when they arise. Health professionals should use plain language with all patients and avoid the use of medical jargon (Paasche-Orlow et al. Visual aids can increase verbal communication e ectiveness. 2006).Improving Verbal Communication. It may not always be possible to identify patients with limited health literacy. Techniques for e ective verbal communication are shown in Table 3 below (Paasche-Orlow et al. When this is not possible. A dietician is shown using visual aids. 37 © Photo by Kara Jacobson .

An e ective way to solicit questions would be to ask “What questions do you have?” This is an open-ended question and allows the patient more room for possible interactive communication with their provider.” Analogies should be selected to relate complex concepts to things the patient already knows (e. Say “Take 1 hour before you eat breakfast” instead of “Take on an empty stomach.” Explain things in clear. Plain. and technical phrases should be avoided. New terms should be de ned.”). Limit information to 1-3 key messages per visit. EFFECTIVE VERBAL COMMUNICATION TECHNIQUES Communication Technique Talk slowly Encourage questions Explanation Slow down the pace of speech when talking with a patient. and “Do you think you can (check your blood sugars now)?” are vague and give the patient the opportunity to avoid the question with a simple “no” answer. Instead of saying.g. Jargon. Many people do not understand percentages. Patients do not understand all the numbers given to them before they make any treatment decision.” you can tell the patient “20 out of 100 people will experience X outcome. “Arthritis is like a creaky hinge on a door. Reviewing and repeating each point helps reinforce the messages. In addition. such as “pain-killer” instead of “analgesic”. Words or expressions that are familiar to patients should be used. Questions such as “Do you understand?”. it is important that other sta should reinforce the key messages. non-medical language should be used.. A “teach-back” or “show me” method should be used to allow the patient to demonstrate understanding and for the health professional to verify patient understanding. statistics.TABLE 3. “Do you have questions?”. plain language Avoid complex numerical concepts and statistics Use analogies and metaphors Limit information provided Verify patient understanding Avoid vague terms 38 38 . “There is a 20% chance that you will experience X outcome.

the health professional should review the health information again and give the patient another opportunity to demonstrate understanding. Graph 2 shows how the teach-back technique should be conducted (Bailey et al. 2008). the health professional can gain assurance that the patient has adequately understood the health information presented. Using this method. After describing a diagnosis and/or recommending a course of treatment. Graph 2: The teach-back method 39 . The health professional should be speci c about what the patient should teach back and be sure to limit instruction to one or two main points.Health providers should also verify that information provided verbally has been e ectively understood by the patient by integrating the ‘teach-back’ technique into clinical encounters with patients. If a patient provides incorrect information. the health professional should ask the patient to reiterate what has been discussed by reviewing the core elements of the encounter so far.

treating children in hospitals. 2. treatment and referrals. meeting mental health care needs. 40 . schools. It can potentially enhance the health literacy friendliness of di erent settings. especially those who are low-income or living in medically underserved areas. 6. 5. mental retardation. with simultaneous interaction such as videoconferencing. MEETING THE HEALTH CARE NEEDS OF CALIFORNIA’S CHILDREN: THE ROLE OF TELEMEDICINE Background Digital Opportunity for Youth Issue Brief. providing dental screenings. 8. within the United States. improving the lives of families of chronically ill children by allowing them to keep their children at home. depression. 3. providing coordination of services for special health care needs. Number 3. or ‘store and forward’ transfers of data for review and consultation at a later time. It can occur in real time.CASE STUDIES : HEALTH SYSTEMS INTERVENTIONS 1. 4. 7. a child care centre or juvenile detention centre. a child’s home. by making information more accessible. It also outlines challenges to successful adoption of telemedicine and provides concrete recommendations for action. especially critically ill children in rural settings. diagnosing. such as autism. Lessons learnt The authors state that telecentres can improve care and information exchange through: screening. treating and monitoring a wide range of paediatric health conditions. screening children for early detection and treatment of vision problems. anxiety and behavioural problems. helping sustain a 24-hour pharmaceutical presence. genetic diseases. It can connect providers with clinics and hospitals. describes how telemedicine—the application of information and communication technology (ICT) to provide health care services at a distance—is used to improve the health of children living in the state of California. Links to health literacy Telemedicine opens up the health system and creates many new communication options.

provider shortages in subspecialties.comminit. Further Information There are many challenges to further adoption of telemedicine. including. expanding the capacity of schools and child care centres to address the health care needs of children through connecting school nurses with physicians. 41 © Photo by Steve Turner . protecting children by conducting child abuse consultations and examinations at a distance. 10. managing chronic health conditions. bringing interactive learning tools to parents in their home communities. and the need for more research demonstrating telemedicine’s impact upon health literacy. legal barriers. 11.9. 13. Telemedicine can link rural health centres to urban resource centres and improve care and information exchange. and 15. unclear administration and contractual organisation. 12. providing conferences and training without extensive travel for rural health providers. See http://www.com/en/node/265778/303 for more information. helping families stay connected when a child has to be hospitalised. facilitating language translation by bringing translators to the exam room in a short amount of time without needing the translator to be physically present. 14.

The website also includes a directory of health and disability support groups. training opportunities. housing. medicines information. but also clinicians and researchers who might need to nd groups or connect with NZORD over policy and service delivery issues. Coping with your condition: This area contains links to practical assistance a patient or family may need. and commentary on policy and consultations. Lessons learnt A functional understanding of the healthcare system is a key element of health literacy. counselling. research. how the process of referrals works and some descriptions of the specialist services to which someone might be referred to help empower patients actively seeking care by demystifying the process. both empowering patients through a sense of control and ensuring that 42 . NEW ZEALAND ORGANIZATION FOR RARE DISORDERS NZORD WEBSITE RESOURCES The NZORD website resource was set up to ensure that good quality resources exist online for patients and families a ected by rare disorders in New Zealand. This is achieved through links to a variety of quality databases with information on rare disorders and other resources. transport. The website provides information on rare diseases. The website also has an area called “Health & Disability Resources” which contains information on: Specialist health services: This area of the website provides information about how specialist health services are controlled. the site o ers guidance on the contents of the databases and how best to navigate and use them. To support the use of this information. educational and vocational assistance to help day-to-day activity and participation in the community.2. The website was designed to enhance the health literacy of its users by tackling the absence of centrally provided and maintained information about rare diseases (in contrast to the huge amounts of information available for most common conditions). which is often designed for health professionals and researchers. The resources are aimed at patients and families primarily. specialist libraries. income support and needs assessment and service co-ordination agencies. This includes links to support networks. a beginner’s guide and o ers guidance to navigating the health system in New Zealand. Participating in your community: This area provides the details of organizations that o er equipment.

of course. 43 . re ect the distinct system and service models in each country. translation of medical information from English to other languages will be necessary. The e ectiveness of the resource is dependent on regular reviewing and updating of the information. These . In order to meet the needs of di erent communities.org/contact). should . It can be time consuming and requires a comprehensive knowledge of the services available.patientsorganizations. However. For more information contact IAPO (www. There is scope to develop similar resources to those provided by NZORD on a country-bycountry basis.care is sought at optimal times at the optimal point of the healthcare system. There are very good resources out there that should be linked to rather than repeated. there is little value in trying to repeat centrally developed information on diseases.

A patient focus group was organized to gather patients’ views. The project worked to enhance both individual provider and agency capacities to deliver information. For more information contact IAPO (www.3. their families and carers. Funding was obtained for an independent facilitator. A meeting of health professionals was convened and subgroups were established. surveys. 44 . Following this survey. A basic lea et was produced for patients about Endometriosis that was to be given to patients on diagnosis. interviews. The Dorset Endometriosis Project was set up to ensure that patients receive the information they need. Links to health literacy The project was initiated after patients reported poor experiences around the quality and availability of information and access to care for their condition.org/contact). UK The Pelvic Pain Support Network is a patient-led organization that provides support to and advocates on behalf of those with pelvic pain. Information is key to empowering patients.patientsorganizations. Further research was conducted into the information that was available on pelvic pain worldwide. It is useful to use a range of methods for gathering patients’ views—focus groups. PELVIC PAIN NETWORK. etc. Lists of sources of information were produced by the Health Information Centre. Focus groups were held to look into the speci c information needs of patients. This involved nding out what information sources patient organizations worldwide had. The survey was evaluated and gaps in the information and the quality of information available were identi ed. Lessons learnt Patients have a great deal of experience of the information needs in their disease area. a group of patients approached the clinical governance manager at the local hospital about issues regarding patient care. one of which was patient information. It can be a long process to follow such a project through. DORSET ENDOMETRIOSIS PROJECT. bringing them together and conducting a patient survey to see how useful they were for patients.

4. up to half of all the people diagnosed with cancer in Peru will not have access to treatment and care. After working closely with cancer patients for a signi cant time and participating in the creation of patient organizations and networks. 85 percent of the patients surveyed were not aware of their rights and responsibilities. self advocacy and political action the patients are informed. patients. trained and empowered. which is often contacted by patients for more information and to complain about the lack of comprehensive explanations from doctors. and all the patients and relatives that were surveyed were eager to receive more information. At the same time. through support and information. In Peru. By attending the Patient University. leadership. as in many other countries in the world. There is an urgent need for prevention campaigns. who do not have access to information and are not aware of their rights and responsibilities. help others and learn more about what they could do to change things. innovative treatments and care. Esperantra created a platform where these practices could be professionalized into an integral training programme. PATIENT UNIVERSITY PROGRAMME CANCER PATIENTS. The di erence between Peru and many other countries is that more than 70 percent of all cancers in Peru are detected at a very late stage. This matched the experience of the organization. Links with health literacy The Patient University Programme works to strengthen individual and group capacities and skills of cancer patients. has been working to improve the quality of life of cancer patients in Peru. Through specialized courses and workshops covering themes such as up-to-date information on cancer in general. This led to the foundation of the Patient University Programme. Some patients and relatives were willing to act. The results showed that 70 percent of all patients were not well informed. a patients’ organization. survivors and their relatives become protagonists. Patients also say that they are often overwhelmed by the obstacles they face when navigating the healthcare system and feel they are left alone to their fate. PERU Since its creation in 2005. Esperantra found there was a critical lack of information for cancer patients in Peru. hospital sta and social services. 45 . cancer is the second highest cause of death. Esperantra. They therefore conducted a study in the three main hospitals that cancer patients attend to nd out how well informed patients were. strategic planning of patient organizations. capable of advocating and defending equality of access to quality treatment and medical services. rights and responsibilities of patients.

to learn how to lead. They have obtained tools to face the situation and move forward. Lessons learnt Organizing the training and leadership programmes as a university gave the patients more credit and recognition for their e orts and involvement. how to be a representative and teacher for other patients and communicate their needs in a constructive way. The many activities and support provided by Esperantra and by the patients’ organizations have a positive in uence on the quality of life and recovery process of the patients. organize and create patient organizations. and the information and support provided. The patients were able to be stronger self advocates and able to make their own informed choices. forums. The same empowered patients are now participating actively and helping in the realization of the Patient University Programme. These activities are often organized in local communities. Empowered patients are eager to pass on their knowledge to others and are capable of becoming important self advocates. The patients were eager to learn more about cancer. Conclusions The Patient University model can be applied to many other contexts around the world and be a great resource for patients faced with other diseases. Some patients feel the need once they feel better to help others who are in the same situation they were once in. Results In the pilot phase the Patient University had good results. other public awareness actions and involvement in health policy making. lectures. It is often better to train relatively small groups of patients at a time with indepth trainings and workshops and continuous guidance. the patients and their families have been able to access global information on cancer and on the newest technological advances. training courses and lectures but they can also attend the activities organized by the patient organizations that are part of the Peruvian Patient Coalition. Through the training.The Patient University takes place in the conference room of Esperantra and in other appropriate locations which are situated near the main hospitals. Not only can the patients attend the workshops. hospitals and schools. In the context of Peru there is a clear need among patients for training in skills such as leadership. locations reaching a speci c public. 46 .

The members of the patients’ organizations that have been created are strong actors in the Patient University Programme. the needs of the local population can in uence the focus of the training and workshops. along with up-to-date information and continuous organizational support which gives them the possibility to create or participate actively in a patient organization or simply pass this knowledge on to others. In other contexts.self esteem. communication and many other basic skills. 47 . putting their skills into practice and sharing them with others. For more information contact IAPO (www.patientsorganizations.org).

25 % could not name at least one factor that could a ect human fertility and only 6 % mentioned a woman’s age as one of the reasons for infertility. CONCEBIR carried out a survey in three Argentine cities. CONCEBIR found that many people do not know what factors can a ect their fertility and therefore do not know how to look after themselves and protect their fertility. lifestyle or contraceptive method used. However. primary medical centres and clinics in the city of Buenos Aires. CONCEBIR FERTILITY CARE CAMPAIGN. ARGENTINA The Fertility Care Campaign is being run by CONCEBIR. Out of 400 interviewees. The information was distributed in public hospitals. They found that many people attending an assisted reproduction medical centre nd out that their fertility has been signi cantly reduced because of their age. Through their work. The poster and the brochure were distributed and a public campaign through the media was organized. CONCEBIR is nding that. In response.5. without needing assisted reproduction technology. a patients’ organization in Argentina. The initial target was all the population of reproductive age in Buenos Aires. The immediate result was to create an interest in fertility and the possibility of taking care of it. summarizing the ten most important factors that a ect human fertility. but the future target will be to reach secondary school pupils as part of sexual education programmes and also run the same campaign in other cities of Argentina. The objective was to make culturally-sensitive information more accessible that could develop people’s knowledge and awareness so as to maximize their chances of starting a family. providing information on ten factors that may a ect fertility. Methodology A survey was carried out in Argentina to evaluate people’s knowledge about fertility (2007) A poster was designed. An information brochure was produced outlining how the ten factors can a ect human fertility and how to protect it. Links with health literacy CONCEBIR worked to address this by exploring ways to raise awareness of fertility care among the population. as in the case of any awareness or 48 . at the time they choose. This was done with the support of two important medical associations in Argentina.

improving the results. 49 © CONCEBIR .public education campaign. Lessons learnt The most important lesson is to be patient because it takes a long time to achieve the objective and to gather interest and consensus from other organizations in order to work in a coordinated and more e ective way.org). CONCEBIR found that it is not only important to include the patients’ point of view. it is taking some time to embed these concepts into social culture. but also the opinions of doctors and other specialists.patientsorganizations. For more information contact IAPO (www.

The tools: American Chronic Pain Association Graphical Communications Tools include: Pain Log Follow-up Sheet Care Card Pharmacy Insert (with the American Pharmacists Association) In Case of Emergency Sheet (with the American College of Emergency Physicians (ACEP)) Nerve Man diagnostic aid Method: Before developing the tools. The problem: ACPA receives many calls from consumers who believe that their health care providers are not taking their pain seriously and that they are not getting the care they need. including text and graphics.6. ACPA then identi ed where the lack of understanding or process disconnects occurred. Once consensus was reached. Target groups include older adults. US The American Chronic Pain Association (ACPA) has sought to o er tools that use graphics to capture critical information and convey it quickly to enhance both initial discussion and longer-term compliance. the ACPA Professional Advisory Committee and the partner organization. materials were produced and posted on the web site and printed. non-English speakers and others with literacy challenges. Many “graphical tools” were developed to enhance patients’ care management skills. ACPA analysed the kinds of questions they received from consumers and the issues raised by caregivers and identi ed the problems in the health professional/consumer relationship. clinics and by individuals independently. Drafts of appropriate tools. were developed and tested with healthcare professionals on the ACPA board. those with reading or language issues and 50 . many consumers call the ACPA o ce with questions about how to take medications and otherwise follow their providers’ instructions following a visit. if any. AMERICAN CHRONIC PAIN ASSOCIATION GRAPHICAL COMMUNICATIONS TOOLS. this involved a survey in partnership with ACEP. In the case of the emergency department project. In addition. The materials are used in hospitals. Links to health literacy: This experience aligns with numerous studies that highlight compliance issues among older adults.

ACPA intends to expand the series to address other speci c conditions and situations. Results: The tools have enhanced communication. Lessons learnt: People are eager to communicate better with caregivers and to comply with treatment strategies.patientsorganizations.anyone wishing to have time-saving tools for better communication with health care professionals. 51 . These tools give them a greater sense of control and help to build a strong functional partnership between consumer and provider. The tools are popular takeaways at ACPA’s stands at professional meetings and are among the most popular downloads on their web site. reduced frustration and improved relationships between provider and consumer. They feel that tools like these empower consumers and enhance the therapeutic process. For more information contact IAPO (www.org). based on feedback from both consumers and providers.

Support health-enhancing behaviour. All students to model and practise relevant social skills. This research has shown that learners retain and apply information best in contexts similar to those in which they learned it (Bereiter 1997. Mayer & Wittrock 1996. Literacy improves employment prospects (with associated health gains). They help children and adults to learn about what in uences their health. There is sound justi cation for embedding health literacy instruction into these settings for children and adults. 4. The development of such literacy skills should be a priority and included in all school and adult education programmes. with particular emphasis on parental involvement in early years education. Train teachers to e ectively convey the material. 7. Actively engage students using interactive activities. Provide adequate time for students to gain knowledge and skills. 52 . Learning may have bene ts in terms of improving attitudes to and competencies for engaging in positive health behaviours and making best use of health services. 8. BOX 7 : CRITERIA FOR HEALTH EDUCATION CURRICULA (Lohrmann & Wooley 1998) Be research-based and theory-driven.4. 1. 6. 3. 2. 5.2 EDUCATIONAL SYSTEMS Schools and other formal and informal educational establishments play a major role in developing literacy skills and fostering literacy in all countries. Discuss how social or media in uences a ect behaviour. the impact of the choices they make and where to nd reliable information. Educational research has documented the impact of context and content on learning. Include information that is accurate and developmentally appropriate. retention and transfer. either by helping individuals to move out of unemployment or through aiding progression in the labour market. Literacy skills may improve health in many direct and indirect ways. Adult participation in learning may also be bene cial for the next generation in terms of improving their chances of learning and health outcomes. The opportunity to provide health education also exists within institutional and community-based health services. Perkins 1992).

There is a strong positive reciprocal relationship between female education and women’s empowerment. Nussbaum 2000). give better health care to their families. children and young people can learn about health and hygiene. nutrition and physical activity while learning about sexual and reproductive health. It also improves their earning potential. with particular emphasis on parental involvement in early years education. Income for women rises by 10–20% for each additional year of schooling. send their children to school and contribute to overall economic growth (Kickbusch 2002. The development of literacy skills should be a priority and included in all school and adult education programmes. Education and literacy has a positive impact on population health— particularly on women’s health and the health of their children (Sen 1999. 53 © Photo by Kara Jacobson . Learning opportunities also exist during immunisation experiences. Information about birth control can be given at the same time as information about the prevention of HIV/AIDS and other sexually transmitted diseases—so-called ‘dual protection’. such that families and recipients understand the disease and the public health bene ts of immunisation. Education empowers women by giving them knowledge and a new perspective on their role.For example. Wils 2002). It is estimated that two-thirds of the world’s 960 million illiterate adults are women. Educated women are more likely to postpone marriage and childbirth.

Secondly. lack of the necessary information or availability of the right type of course or learning environment may further block participation. modern school health programmes require e ective collaboration—especially between separate education and health agencies (IOM 2004). Thirdly. mental capacity. And interventions for people in their mature years—especially those with chronic illnesses—might focus on self care.g. testicular examinations and annual cervical smears. and previous negative experiences at school. Understanding barriers and facilitators to adult learning According to Hillage et al. lack of interest or con dence. Firstly. the issues of communicable and noncommunicable disease and the need for parental and childhood vaccination could be reinforced. Young mothers are receptive to learning about recognising and treating childhood illnesses. Situational: Cost.The educational intervention should be pitched at a level commensurate with age. use of condoms) along with cancer prevention and detection—breast self examinations. gender and environment. Obstacles to health education initiatives The World Health Organization (1996) has described several barriers that may impede the implementation of school health programmes. as well as knowing the system and structural barriers and policy enablers. might focus on reproductive health (e. for example. policy makers and political leaders—as well as the public at large—often do not fully understand the true impact of modern school health programmes on health. (2009). Any planned educational intervention will need to address these potential obstacles. other prevalent STDs and unintended pregnancy. lack of time and/or transport or childcare and language (especially for non-native speakers) are common situational obstacles. In young adults. Three reasons why people do not take part in learning have been identi ed: Dispositional: lack of motivation related to perceptions that the learning is not relevant to them. Programmes for adolescents. for example those that discuss HIV infection. some may not support the programmes because the content is considered too controversial. policy actions and interventions to address social inequities in education (and education-related di erentials in health literacy) must be based on a clear understanding of why people do not engage with learning activities. Systemic: Poor awareness of options. 54 .

exible o erings and funding options in community settings. Schools and other formal and informal educational establishments play a major role in developing literacy skills and fostering literacy in all countries. is a basic health literacy competence. Learning to read and understand labels.Initiatives which have been shown to stimulate demand for post-16 learning (Hillage & Aston 2001) generate demand through targeted publicity. 55 © Photo by Steve Turner . workplaces and to speci c populations (especially to young people. people with skill de cits and underserved communities). women. advice and guidance. for example.

or about $5. which o ers clear information on more than 50 common childhood illnesses. researchers found that visits to a hospital emergency room or clinic dropped by 58 percent and 42 percent. parents being better informed about handling their children’s health needs translated to a 42 percent drop in the average number of days lost at 56 .CASE STUDIES : EDUCATIONAL INTERVENTIONS 1. US HERMAN 2007 The study involved nearly 20. Moreover.000 children in 35 states.. Links to health literacy It gave parents access to essential health information and the con dence to address their children’s basic health care needs. colds and earaches at home. by Gloria Mayer. The Health Care Institute training is adapted to various languages and cultural needs of the participating families. Outcomes Tracking the Head Start families enrolled in a health literacy programme.N. This added up to a potential annual saving to Medicaid of $554 per family in direct costs associated with such visits. respectively.. R. each Head Start family was given a lowliteracy medical guide. R. and Ann Kuklierus. Approach Parents were surveyed about their family’s health care habits three months prior to the training and six months afterward. At the outset. As part of the study. UCLA/J&J HEADSTART PROGRAMME. 60 percent said that they did not have a health book at home to reference when a child fell ill. as parents opted to treat their children’s fevers.N. What to Do When Your Child Gets Sick.1 million annually.

5°F.3 to 9. Post training.herman@anderson.8) and 29 percent drop in days children lost at school (from 13. 57 . the number of parents using the medical guide as a rst source of help jumped from ve percent to 48 percent. in reality 69 percent reported taking a child to a doctor or clinic at the rst sign of illness. For more information contact ariella.ucla.5). More signi cantly.7 to 3. indicating a better understanding and higher comfort level in dealing with common childhood illnesses. with 43 percent doing so for a mild temperature of 99. Almost 45 percent said they would take their child to a clinic or emergency room for a cough rather than provide care at home. Prior to the training. researchers found a marked improvement in parents’ self con dence. parents said they were “very con dent” about caring for their sick children— yet. Parents also reported feeling more con dent in making health care decisions and in sharing knowledge with others in their families and communities.work (from 6. with only 32 percent indicating that they would still go rst to a doctor or clinic.edu.

000 young people in the UK experience a blackout. Every year more than 225. Results 1. UK SHINE A Links with health literacy The Shine a Light on Education programme aims to make school settings more health literacy friendly for young people with seizures and black-outs by educating teachers. So far. Older students often nd access to education is limited/denied. Based on enquiries. 58 . STARS members developed materials and processes: 1) To educate educational establishments 2) To involve families with diagnosed syncope members 3) To initiate and train volunteers Both educational establishments and STARS members were informed of these new resources. Numerous presentations have taken place across the UK and the uptake for these events has been signi cant. 3. STARS information booklets and sheets were published and the Education section of the STARS website was launched with on-line materials. SYNCOPE TRUST AND REFLEX ANOXIC SEIZURES STARS LIGHT ON EDUCATION. The number of requests from schools for information and presentations has continued to grow. All of the literature produced for the project is free to patients and educational establishments and it is all endorsed by the Department of Health in the UK. Many young people diagnosed with a form of syncope (transient loss of consciousness. Centres and families responded positively to the publication of support materials and the website.2. This was evidenced through the rise in requests for booklets and the 1 million hits on the website. 50 schools have requested presentations which STARS provides free of charge. 2. blackouts. The programme also provides information and advice for parents and children on how to cope with syncope in their learning environment. fainting) struggle to either access full-time/full curriculum education. As a result of this STARS established an education programme for use in educational establishments from nursery to university. sta and carers on syncope and training them in condition management.

Better education about a condition leads to improved communication between families and schools.org).000 information booklets have been sent out following requests. The current popularity of the programme means that STARS needs more trainers to provide equal support across all areas of the UK. especially for those previously denied or limited from activities. 15 SIR presentations have been made to nurseries. seeking advice and support on re ex anoxic seizures (RAS). To date 1.The project’s success is illustrated by the fact that across the UK. STARS has received many enquiries from families and schools. carers and pupils diagnosed with syncope continue to contact STARS for information and guidance. For more information contact IAPO (www. educational establishments. 59 © STARS . care and management improves and education is more successfully accessed. and requests are coming in weekly. schools and colleges with ten more pending. Lessons learnt It is important to anticipate growth in demand.patientsorganizations.

3. REGIONAL CHILDREN’S ANTIRETROVIRAL THERAPY ART LITERACY TOOLKIT, AFRICA Background The ART Literacy Toolkit is also known as the Kid’s ART Literacy Toolkit. It seeks to enable children to gain a comprehensive level of literacy around HIV and ART issues pertinent to them. It aims to empower children (primarily aged between 6-11 years, though also relevant for teens) who are living with HIV and ART, helping them gain an appreciation of HIV and ART in context. Links with health literacy For use in educational systems, this Toolkit is designed for children and members of their ‘circle of care’, including: teachers within school-based programmes; parents and guardians within the family environment; leaders within the religious sector; and health care workers, social workers, community workers and counsellors within a service provision context. Lessons learnt Using a cascade method, the model was able to be spread throughout community members, who used and adapted it. The booklets helped children unpack both the speci c and practical issues related to HIV and ART through ‘edu-tainment’ activities, encouraging them to take action within their own lives to make a di erence. Simple cartoons taught children to overcome challenges and changes in the body and helped them learn how to integrate treatment into daily living. Children were encouraged to identify their fears and develop solutions as well as plan for their future hopes and dreams.

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Further Information Each toolkit contains: an 8-booklet series with narratives, and edu-taining activities to address basic facts about HIV and ART, testing and disclosure, support for a child on ART, stigma and discrimination, positive living, adherence, supporting other children on ART, and suggested ways of using the toolkit; a child’s adherence calendar and a watch, to enhance adherence responsibility amongst children; an interactive poster that engages the child to actively process ‘Respect’ as a foundation of being responsible, not violating rights and alleviating stigma and discrimination; a brochure on tuberculosis (TB) and HIV co-infection, ART, and children; three advocacy stickers; an HIV and ART knowledge board game; and a pack of 20 quiz cards on HIV and ART issues. The Toolkit is published by Southern Africa HIV and AIDS Information Dissemination Services (SAfAIDS). See http://www.comminit.com/en/node/274893 for more information.

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4. BEAT IT! HIV/AIDS TREATMENT LITERACY SERIES, SOUTH AFRICA Background The Beat It! HIV/AIDS Treatment Series is a training resource consisting of a series of 21 programmes on DVD or VHS and accompanying workbooks. The series was designed to support discussion and workshops on HIV/AIDS treatment. Links with health literacy Used in educational systems, the series provides an introduction to the core information needed to respond creatively to people living with HIV/AIDS in their environment. It combines personal documentary accounts of people living with HIV/ AIDS with expert advice and explanations. Each programme has an accompanying workbook that provides additional information and a summary of the topic. Lessons learnt The workbook can help facilitators prepare and present HIV/AIDS treatment information, o ers questions to stimulate discussion and o ers methods of checking whether the information has been understood. Further Information: The literacy series is published by Community Health Media Trust. See http://www.comminit.com/en/node/187822 for more information.

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Lessons learnt The concept of a Speaking Book can be applied to meet a whole range of needs from educating young children on health care issues such as diabetes and asthma.com/en/node/188442 for more information. Speaking books are distributed in the communities they serve and paid for by government departments.5.taking the rst step Allies against substance abuse Help for child-headed households Further Information: See http://www. read by well-known local personalities. designed and produced these interactive.comminit. Links with health literacy The Books of Hope series has been created to meet the Health Care Education needs of Africa’s rural and disadvantaged communities and as a means of overcoming the low levels of literacy. in association with the South African Depression and Anxiety Group. 63 . to take the reader on a step-by-step guide to wellness and encourage readers to build self-con dence through a simple action plan. read. foundations and organisations. and how they can cope with their illness. SOUTH AFRICA Background Books of Hope. Topics of the books include: Teen suicide prevention HIV and AIDS doesn’t mean living with depression Living free of Tuberculosis (TB) Mobilising against malaria Treating trauma and Post-Traumatic Stress Disorder (PTSD) HIV and AIDS medication . multilingual speaking books that can be seen. These hard-backed books feature a sound track. to direct mail promotional material to support a product or service where the novelty factor will ensure that the recipient will get the message. SPEAKING BOOKS. heard and understood by the reader regardless of their reading ability.

life skills and the teacher training to deliver them through schooling. University of London. such as My Future My Choice and Geracao Biz. Distance and Flexible Learning (ODFL) in HIV/AIDS Prevention and Mitigation for Affected Youth. ODFL has helped to: increase access to education (especially for remote or marginalised groups) enhance school quality to increase child survival and family health raise public awareness and action on health initiatives encourage people to practise healthy behaviours. LoveLife and Khomanani. distance and exible learning (ODFL) to increase access to education for youth who are out of the formal education system. 64 . Experience with these programmes has shown that to be successful young people must participate in the design and implementation of the activities to make sure they are tailored to their literacy levels and real-life contexts. A signi cant proportion of the teaching is done by someone removed in space and/or time from the learner. learners can choose the time. In South Africa. peace and stability and that the response of the education sector has focused largely on the curriculum to provide relevant information. place and pace of their study. where lack of infrastructure reduces opportunities for mass media campaigns. looks at the potential of open. Links to health literacy Through the educational systems o ered by ODFL. There are few strategies to address the needs of out-of-school youth. school dropouts are increasing in many a ected countries. however. In this research of ODFL in Mozambique and South Africa. even though children are increasingly missing lessons. This paper.6. numeracy or livelihood skills. researchers found that AIDS has been declared an emergency threatening development. In Mozambique. Open. based on eld studies in Mozambique and South Africa undertaken by the Institute of Education. In health education. dropping out of school and unable to access the national curriculum or develop basic literacy. South Africa and Mozambique Background Education is a key protective factor against HIV. HIV prevention methods are mostly face-to-face with some ODFL support materials. ODFL e orts to prevent the spread of HIV have largely relied on television and media campaigns such as Soul City.

65 . But for this to happen there is a need to radically rethink ways that education can be delivered. Further Information: See http://www.Lessons learnt There is now a real opportunity to change policy.com/en/node/219772 for more information. ODFL could play a much greater role in such educational reforms by sharing the burden schools face and helping to integrate responses to learners’ needs more e ectively. accelerate the educational response and transform ine ective systems.comminit.

trains media and organisations and works to provide information for treatment literacy. programmes. ethical and humane treatment. both formal and informal. Action can be taken in a variety of settings. Lessons learnt Objectives are met through a number of di ering initiatives that cover a broad range of communication and advocacy strategies. Examples include: The Frontiers Project – A programme designed to reach middle and upper class people living with HIV/AIDS. and facilitate sector-wide HIV/AIDS prevention. ensure non-discriminatory gender-based responses to HIV/AIDS prevention and treatment. The organisation conducts advocacy. including through varying educational systems. testing and treatment of HIV/AIDS. support the full participation of people with HIV/AIDS in all responses.7. work in partnership with other persons and institutions including governments to facilitate information sharing and build platforms for networking. newsletters and other means. Media Education Project – PATA has developed a 10-episode Health Tip segment for a national network programme with over 30 million viewers and facilitated a 66 . as most HIV/AIDS programmes in Nigeria focus on the economically poor. workshops. build capacity of people and institutions at all levels to ensure an increase in treatment access. through media. Links with health literacy The organisation’s objectives are to: promote access to treatment education. NIGERIA Background Positive Action for Treatment Access (PATA) is a non-governmental organisation working to ensure that every individual has access to treatment education and every person can access qualitative. POSITIVE ACTION FOR TREATMENT ACCESS PATA . a ordable. advocate for access to a ordable qualitative diagnostic tests and drugs to treat HIV/AIDS.

schools. Further Information: See http://www.com/en/node/127765 for more information. PATA conducted a training of 50 people from organisations and support groups on HIV/AIDS related stigma and discrimination. This aims to start a drug revolving fund for the purchase of tax-free drugs to help those who cannot a ord the expensive drugs and/or have no access to free and/ or subsidised government programmes. People for People Project (Stigma Fighter) – In June 2004. They have been involved with training sta of organisations on treatment literacy and HIV prevention. Alumni associations and other clubs and societies. Resource Mobilisation Project – PATA has introduced a Buyers Club to help alleviate the nancial burden of purchasing drugs for HIV/AIDS treatment.comminit. 67 . formulating a stigma ghter corps who made a commitment to challenge and address stigma and discrimination wherever they see it manifest. ethical treatment. Treatment Advocacy – PATA helps to keep treatment issues on the front burner of the HIV/AIDS agenda and help communities to understand what is available and can be strengthened. Public Education – PATA has been involved in a lot of treatment literacy programmes in health facilities and other support groups of people with HIV in various parts of the country. PATA also has a column in a leading Nigerian newspaper. PATA has also given talks in churches. Positive Moments – PATA’s newsletter aims to ful l the organisation’s vision of ensuring universal knowledge about HIV/AIDS and universal access to a ordable.number of training workshops for Nigerian journalists.

such as the Health On the Net (HON) standards (http://www. enable them to make healthy choices and counteract the negative in uences of some industries. choices and behaviours. Public information approaches which support health literacy are thought to provide a necessary basis for: informed decision-making 68 . accessible and understandable information so that they can avoid risky behaviours. television. Some quality standards and certi cations. These marketplaces shape people’s health perceptions. Industries such as tobacco.nhs.uk/). mobile phones and public advertising spaces—are a main source of health information. have been developed for quality control of health web pages but have not yet been applied globally and have not been shown to make websites easier to understand. reliable and independent information from sales-driven product marketing and advertising. Separating fact from ction requires some well-developed health literacy skills. internet.nhsdirect.html). behaviours and choices even though they often contain information of variable quality that can be more confusing than helpful.3 MEDIA MARKETPLACES For many people media marketplaces—including print. People need credible. This might be about lifestyle choices. Recognising and countering these negative health messages require literacy skills to distinguish credible. Interventions Increasingly. like the NHS Direct in the UK (http://www. alcohol and fast food companies use sophisticated communication techniques which glamorise and promote unhealthy products and lifestyles. media and social marketing approaches to get independent evidencebased information to stand out and shape people’s perceptions. reliable.ch/HONcode/Conduct. Such information can help raise people’s understanding of risks. can help people decipher the variety of health information. the control of infectious diseases and environmental threats to health. Commercial and political interests often dominate the media marketplaces. public health advocates and educators are using a wide range of technologies.4. National health information services. This domain of health literacy activity has been a very active intervention area in all countries. radio.hon. mental wellbeing. Interventions can also be used to shape the development of policies and structures that can protect health—for example smoking bans in public places.

is more likely to be e ective. which includes a variety of di erent health. promotion and place—see Box 8 below) and reinterprets them for health issues. It is also essential to include the viewpoints and experiences of the target population in the design. you reach nobody. 69 . adopted and successfully di used within individual communities (Allen 2001. to which the reader is referred. Social marketing approaches focus on the needs of well-de ned consumer groups—a shortcoming of ‘traditional’ public health communication. social and economic contexts that surround behaviour choices (NSMC 2007a. Furthermore. Manderson 1999. price. It takes the planning variables from marketing (product. education. A key principle is that if you try to reach everybody.understanding of bias and levels of evidence statistics and probabilities. social and cultural perspectives. Hastings 20075). and critical thinking skills Ratzan (2001) points out that in designing e ective and understandable health communications it is important that the context and content re ect the realities of people’s everyday lives and communication practices. It seeks to address and adjust where needed the psychological. Social Marketing Social marketing uses marketing principles alongside socio-psychological theories to develop behaviour change programmes. Watters 2003). health information that is developed from an interdisciplinary approach. implementation and evaluation of all interventions (IOM 2004). 5 Gerard Hastings’ book provides a series of instructive case studies.

however. or an idea. 70 . 1993. Condoms are more likely to be used when such use is supported and reinforced by peer groups and the community at large. social. it is essential that condoms be widely available. the act of not drinking in a group can have psychological costs of anxiety and social costs of loss of status. Price refers to psychological.BOX 8 : THE ‘FOUR PS’ OF SOCIAL MARKETING Product refers to something the consumer must accept: an item. Promotion pertains to how the behaviour is packaged to compensate for costs—what are the bene ts of adopting this behaviour and what is the best way to communicate the message promoting it. or convenience cost associated with message compliance. Equally important to physical availability. place refers to the availability of the product or behaviour. higher self esteem or freedom from inconvenience. studies indicate that discussions of immunisation on soap operas in some countries have actually increased the number of mothers seeking vaccinations for their children (Glik et al. In some cases. economic. For example. a behaviour. This could include better health. Finally. increased status. and in other cases it is a behaviour such as not drinking and driving. 1998). For example. p22) Edutainment Educational entertainment approaches—so-called ‘edutainment’—have been shown to have a positive impact upon learning and action by target audiences. is social availability. (Wallack et al. the product is an item like a condom. If the intervention is promoting condom use.

org. © Book cover by Soul City 71 . SOUL CITY. uses mass media campaigns to change health practices at the individual.CASE STUDIES : MEDIA MARKETPLACE INTERVENTIONS 1.soulcity. Through drama (soap opera) and entertainment. For more information see www.za. a non-governmental organisation (NGO). The television programme consisted of a 13-part Soul City’s Violence against Women Booklet. Soul City is a dynamic and innovative multi-media health promotion and social change project. interpersonal and community levels. Soul City reaches more than 16 million South Africans. The project used television and radio entertainment-education programmes that were broadcast nationwide. SOUTH AFRICA Links to health literacy Soul City.

38% of both audiences were youth aged 16-24. These were supplemented by printed materials distributed nationwide through newspapers and a national advocacy strategy involving lobbying of government and decision makers. broadcast weekly on prime-time national television. 66% of the television audience and 67% of the radio audience were women. domestic violence and sexual harassment. Forty-two percent of the television audience and 54% of the radio audience lived in rural areas. Speci c ndings include: Reach: The television and radio programmes reached diverse audience segments in terms of education.g. Lessons learnt Impact on creating a supportive environment: The ndings provided evidence that Soul City contributed to creating a supportive environment for facilitating behaviour change. and 22% of the television audience and 26% of the radio audience had no formal schooling or some level of primary-level education only. The audience members reported that the broadcasts conveyed constructive and pro-social modelling of attitudes and behaviours and showed plausible alternatives or coping strategies in realistic and familiar settings. particularly in the areas of domestic violence and HIV/ AIDS. Impact: Soul City entertainment-education broadcasts were received by more than 80% of the target audience. and e ective in increasing health literacy. The media campaign addressed issues in HIV/AIDS and youth sexuality. such as the television and radio dramas’ positive impacts on the usage level of the Stop Women 72 . hypertension. public marches) that led to the successful legislation of the Domestic Violence Act in 1999. media advocacy and community mobilisation (e. perceived as credible source of health-related messages. Soul City had impacts on lobbying. credible and entertaining educational vehicle.. sex and geographical location. and small business development and personal nance. especially with reference to domestic violence and HIV/AIDS. Audience reception: A qualitative assessment of focus group and interview responses in six sites revealed that the entertainment-education was perceived as a relevant.drama. The radio programme was a 45-part drama broadcast daily. age. The ndings pointed to synergetic e ects of Soul City.

Impact on individual change: The exposure to the Soul City entertainment-education was associated with the greatest improvement in knowledge and awareness of the Domestic Violence Act. and attitudes and subjective social norms around sexual harassment.pdf/view. the synergy of multiple. the drama edutainment format. For more information. There was no quantitative evidence of an impact on personal attitudes pertaining to sexual behaviour. facilitated collective action and the formalisation of community structures. historical dealing with multiple issues. facilitated a sense of collective empowerment to e ect change. and the enhanced communication between community leadership and their constituencies who used the television and radio dramas as common reference points. see http://www. an understanding of the importance of collectivism. 73 .za/publications/papers-1/ evaluating-health-communication. and intention to do something to stop violence against women.org. community action against domestic violence. and provided positive vision and hope for a better future. sexual behaviour itself. The study concludes by discussing the factors that contributed to the positive outcomes of Soul City including: the multimedia format. and a theory-based intervention strategy. It raised collective health consciousness. knowledge and awareness of where to nd support regarding violence against women. Impact on social and interpersonal environment: The ndings suggested that the Soul City entertainment-education contributed to the empowerment of local communities. mutually reinforcing intervention components.soulcity. reinforced social networks. condom use.Abuse Helpline and the AIDS helpline.

food security. education and culture. Listening groups are formed around these radios and are requested to participate in programme research. aural learning traditions in Madagascar mean that the local people have a far greater capacity than Western audiences to listen to radio and remember details of key messages. Project Radio is a rural radio communications network for development funded by the European Commission. 74 . natural resource management. in collaboration with 71 local partners. However. PROJECT RADIO. women and children who live in some of the economically poorest areas of the South. Using the media marketplace. The project aims to deliver education and information to isolated rural populations in the South of Madagascar via radio broadcast empowering rural producers. They cover a range of topics including cattle rearing. alleviate the e ects of poverty and increase general standards of living. over three-quarters of the rural population are illiterate and villagers have few means to learn how to improve their situation and reduce their economic and social vulnerability. MADAGASCAR Background Implemented in 1999 by the Andrew Lees Trust (ALT). environment. It strives to improve their food security. production and monitoring.000 people directly at a cost of less than one euro per head per year.2. an average of 30-40 new programmes are produced each month in local languages and distributed to 40 local FM radio stations in Tulear and Fianarantsoa Provinces. Villagers are able to listen to the programmes via Freeplay clockwork and solar-powered radios which the project places with village ‘responsables’. mother and child health. farming. healthcare. Since the project’s further expansion in 2006. animal husbandry. Further information: The Contribution of Radio Broadcasting to the Achievement of the Millennium Development Goals: Research Findings and Conclusions of a Study of the Andrew Lees Trust Project Radio. which broadcast the programmes in exchange for radio equipment. the programmes on Project Radio reach approximately 900. Project Radio claims. Links to health literacy According to organisers. family welfare. non-governmental organisations (NGOs) and service providers. HIV/ AIDS awareness.

See http://www. environmental issues. and gender inequality. construction of environmentally-friendly woodstoves. agricultural yields. social and administrative issues. Radio is also reportedly having a positive impact on uptake of health services. and awareness of strategies for poverty reduction through income generation and community associations. mother and child health. tree-planting. enrolment in literacy classes.comminit. 75 .Lessons learnt The overall conclusion of the research was that the project is achieving some notable success in changing and enhancing knowledge and attitudes on topics such as HIV/AIDS.com/en/node/113895 for more information. family planning.

Stimulate and create capacity-building within the community by providing access to local. holding research workshops to identify the broadcast information needs of communities. UGANDA Background Launched in October 1999. Furthermore. RADIO APAC. In an e ort to reach as many community members as possible. Radio Apac was implemented by a partnership of the Commonwealth of Learning. its programmes are bilingual. Conduct relevant training for building entrepreneurial skills of the women and youth in the community. Lessons learnt The station has learned the importance of engaging with the community in the production of programmes. multi-cultural and multi-ethnic.3. Radio Apac is a community radio station broadcasting in northern Uganda that works to sensitise and educate residents of Apac about HIV/AIDS and other issues of importance to the community. the station recognises women producers and other minorities in the overall production of its programmes. national and international information services and resources. 76 . record. responding to the social and cultural needs of minority groups. as well as to improve the livelihood of Apac’s people through participatory initiatives that are inspired by its broadcasts. Radio Apac has speci c objectives that include: Support the community and stimulate rural development by facilitating access to information. Together they hope to improve the way and speed via which community members access and share information. Generate. How it fits in with health literacy Through use of the media marketplace. an Apac-based non-governmental organisation (NGO) called Apac Sustainable Development Initiatives (ASDI) and members of the Apac community. broadcast and store local information and knowledge from resources available to the community. Import skills in information searching including the use of modern information technologies.

In post-modern society digitalized images and information can be more compelling than reality! Health literacy advocates need to capture the power of the media to help individuals and agencies improve their skills and capacities. Community Multimedia Center Network.Initial programming was educational – including distance education for primary and secondary schools. See http://www. 77 © Photo by Steve Turner . health. vocational training programmes and governance.comminit. women and youth. AIDS awareness and farming practices.com/en/node/132280 for more information. nutrition based on traditional foods. Also. Further Information: Radio Apac’s partners are National Association of Broadcasters Uganda. health education. environment. business. adult literacy programmes. Programming has expanded to include agriculture. Radio Apac broadcasts programmes provided by Voice of America (VOA). World Association of Community Radio Broadcasters. AMARC Africa.

communication in many languages was used. posters.9% of nonlisteners. In Zambia supply of services was increased and there was a strong emphasis on demand creation through a number of communication activities. but also through e ective and innovative e orts on the demand side. health talks and community based activities. Malawi and Zambia. dramas. AND GHANA. The TV and radio campaign was particularly successful and the report shows that 24. this 26-page evaluation report shares information from three case studies undertaken in countries that were identi ed as having been successful in increasing contraceptive use and lowering fertility – Ghana.4. the report shows how each country reacted to an increased use of the media marketplace. The case studies found that the programmes were successful not just through supply-side interventions.4% of listeners of any radio programme were currently using family planning compared with only 11. MOVING FAMILY PLANNING PROGRAMS FORWARD: LEARNING FROM SUCCESS IN ZAMBIA. Vans that brought information. such as radio jingles. including both working with the communities and bringing services closer to rural populations. the Contraception Prevalence Rate (CPR) increased from 7% to 26% between 1992 and 2000. Under the Ghana Family Planning and Health Program (1991-1996) IEC activities addressed constraints including widespread myths. Malawi and Zambia. Links with health literacy As an evaluation of the family planning systems in Ghana. On the demand side. Key messages were developed in consultation with the community to ensure that they were appropriate and meaningful. rumours and health fears. The campaign gave people the knowledge and tools to see that family planning was directly related to their lives and their personal aspirations for a better future. education and communication (IEC) messages developed through community consultations. materials and songs moved throughout the country. MALAWI. In Malawi. such as creation of a family planning logo and radio and television programmes. THE REPOSITIONING FAMILY PLANNING CASE STUDY SYNTHESIS REPORT Background As part of the Repositioning Family Planning Program. Nearly 7 out of 10 men and half of the women interviewed in 2003 reported 78 . Then in 2001 the Ghana Health Service launched the Life Choices behaviour campaign to reposition family planning in people’s minds and dispel rumours about methods. ooding Malawi with information. across the economic spectrum.

comminit.” Lessons learnt The evaluation highlighted the importance of addressing the demand side of family planning through e ective IEC. Exposure to IEC messages was associated not only with increases in knowledge but also with changes in behaviour. it’s your choice. Communication activities helped to bring about a shift from seeing family planning as not only a way to limit the number of children (which often led people to associate family planning with not having any children at all) to seeing it as a way to space births and improve the health of women and children.com/en/node/275898 for more information.“Life choices: It’s your life. See http://www. such as increased use of modern contraception.that they had heard the key slogan of the campaign . 79 . it is essential to consult the community. The report concludes that to develop appropriate messages. The high levels of knowledge of family planning in all three countries demonstrate that IEC can be e ective even in settings with low literacy.

the Andrew Lees Trust (ALT) has collaborated with the National HIV AIDS Awareness Committee of Madagascar (Comité Nationale Lutte contre le SIDA . In addition. Amongst the urban population. Furthermore.000 radios for the CNLS across the Provinces of Toliara and Fianarantsoa. 71% of the participants mentioned having heard a radio programme on HIV/AIDS made by Project Radio. The evaluation also indicated sound knowledge of methods of prevention. radio was mentioned by 89% of the respondents as most important. ALT also distributed 2. the evaluation suggests that programmes on stigma and discrimination have a major impact on attitudes towards people living with HIV and 80 . Links to health literacy This project aims to open up the media marketplace by producing radio programmes about HIV/AIDS and creating increased access to radios in the rst place. setting up dedicated listening groups to receive national broadcasts about HIV/AIDS as well as locally produced radio programmes on the subject. explaining complex medical issues to an illiterate audience is challenging. Of those surveyed. in rural areas. the most frequent being transmission by mosquitoes (15%). 77% mentioned both using condoms and being faithful. Of the respondents. 96% mentioned sexual relations and 78% mentioned blood as methods of transmission. 75% mentioned both sexual relations and blood. IMPACT EVALUATION OF PROJECT RADIO SIDA. some people still feared transmission through water or through sharing of clothes. The survey also found that some false beliefs on transmission continued to be held. 96% mention radio. During the evaluation. the percentage is slightly lower at 82%. Lessons learnt The evaluation also found that the programme increased knowledge of three modes of transmission of HIV. ANDREW LEES TRUST. According to the organisers. An evaluation of the project found that radio is the most important source of information on HIV/AIDS in Madagascar. particularly in this region where traditional beliefs attribute illnesses to spirit possession. 95% mentioned using condoms.CNLS) to deliver HIV information via radio to rural populations in southern Madagascar.5. 81% mentioned being faithful and 28% mentioned abstinence. Also. Only 38% mentioned mother-to-child transmission. MADAGASCAR Background Since 2003.

com/en/node/269640 for more information. 81 © Photo by Kara Jacobson . Further Information: See http://www. According to the organisers.comminit. after hearing a programme on stigma and discrimination.AIDS (PLWHA). It states that people’s rst reaction is to isolate and make public the identity of PLWHA. Knowledge of how HIV is transmitted from mother to child may help in the prevention of disease. attitudes changed very fast. as the community is considered more important than individuals.

However again. researchers found that “not all parents could a ord the additional expenses of separate towels. exposure to the outreach programme was related to reported increases in the frequency of making sure that children washed their hands before eating (a gain of 5% over the control group) and washing face with soap and water (a gain of 15% over the control group). and having salad. In terms of hygiene the outreach programme had a measurable impact. including ones that are most a ordable and accessible. some families with limited economic means engaged in e ective alternative practices such as brushing teeth with ngers. Working closely with local community development associations (CDAs). designed to provide children with an opportunity to learn a broad range of literacy.”While there was evidence of positive changes for many families. routines requiring commercial items such as toothbrushes were beyond the means of the poorest households.6. fantasy and daily life situations. half-hour television series. in that it “had a signi cant impact on health. using humour. hygiene and nutrition of their children. It is the Egyptian adaptation of the educational television series Sesame Street. providing parents and caregivers with information about improving the health. EGYPT Background The Alam Simsim Outreach Program is a collaboration between Al Karma Productions (Cairo. cognitive and social interaction skills. fresh fruits and milk regularly. 82 . evaluators found that “both parents and children bene ted” from the outreach programme. For example. ash cards and a healthy habits calendar). the outreach team developed a 2-month training component. toothbrush and toothpaste.” They recommended that the Alam Simsim outreach programme continue to model a variety of strategies. Egypt) and Sesame Workshop (New York. ALAM SIMSIM OUTREACH PROGRAM. Alam Simsim is a multiple episode. nancial circumstances confronting some families can be crucial considerations in the design of future training and outreach programmes. hygiene and nutrition practices. For example. as well as educational materials for parents and children (such as booklets. music. launched in December 2002. USA). Notably. Links with health literacy The media marketplace was used here to reach children with an educational system in place to back it up. numeracy. In brief. Alongside the TV series is an outreach initiative.

Lessons learnt Important health knowledge and behaviours increased after participation in the programme. For example, 32% more parents and caregivers with the experimental group (those exposed to the outreach programme) demonstrated knowledge of the Diphtheria, Pertussis (Whopping Cough) and Tetanus (DPT1) vaccine, whereas knowledge levels of DPT1 remained relatively unchanged within the control group. Further Information: This outreach initiative reached approximately 10,600 parents, teachers and other caregivers in Minya, Beni Suef and Cairo governorates between April 2003 and January 2004. See http://www.comminit.com/en/node/70400, http://www.comminit.com/en/ node/149170 and http://www.comminit.com/en/drum_beat_343.html for more information.

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4.4 HOME AND COMMUNITY SETTINGS People are called upon to make daily health-related decisions in their homes and communities. Families, friends, peers and community resources are key sources of health information. These sources model behaviours and shape the early and continuing development of functional health literacy skills related to product and service choices. They also provide basic information about health-promoting, healthprotecting and disease-preventing behaviours, as well as self- and family care, ‘alternative therapies’, available support services and rst aid. 4.4.1 Challenges Chronic diseases According to WHO (cited in Pruitt and Epping-Jordan 2005), chronic diseases—for example diabetes, emphysema, heart disease and cancer—currently account for more than half of the global disease burden in both developed and developing countries. People with chronic diseases have more health literacy demands, such as the need for self management (see below), the need to coordinate care with multiple providers and the ability to manage multiple, lifelong prescription medications. These people, however, often have poorer health literacy skills. Patients with chronic diseases and limited health literacy have been shown to have poor knowledge of their condition and of its management. They also experience di culties with oral communication. A study of patients with diabetes found that poor health literacy was associated with worse blood sugar control and higher rates of complications such as retinopathy, blindness, heart disease and strokes (Schillinger et al. 2004; Williams et al. 1998a, 1998b). WHO and several international health professional associations have called for major changes in health workforce training to develop the provider skills required to meet the health literacy and other needs created by the prevalence of chronic illness. Skills called for include the ability of providers to support self-managed care, build more partnership-based provider–patient relationships and communicate more e ectively (Pruitt & Epping-Jordan 2005). Self management In the past, patient health management was primarily the physician’s responsibility. However, in many health systems people are increasingly encouraged to take more responsibility for their own health. To make appropriate self-management decisions,

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people must locate health information, evaluate the information for credibility and quality and analyse risks and bene ts. Furthermore, people must be able ask pertinent questions and express health concerns clearly by describing symptoms in ways the providers can understand (IOM 2004). Moreover, people are increasingly challenged to make sound health decisions in many contexts of daily life. For example, they have to read and understand product labels and warnings; make lifestyle choices about food, activity, cigarettes and drugs; and evaluate the safety of chemicals in products they buy. Such decision making requires an understanding of the bene ts of being healthy and information about personal health issues. All of these everyday demands require people to be able to assess their current health and consider and deal with the many socioeconomic factors and cultural values that in uence it. For all this they need to have health literacy competencies that allow them to take responsibility for their own and their family’s—and, where necessary, their community’s—health (Kickbusch & Maag 2008). Finally, many people use alternative therapies. This includes traditional healing approaches, nutritional supplements, acupuncture, homeopathy and a wide variety of other therapeutic and healing techniques. The estimated global market for such interventions equals or exceeds allopathic health care markets in many countries. The need to make choices between alternative approaches and standard medical care creates further challenges. Community participation Community participation aims to identify, shape and advance shared interests in priority issues for community health. This might be investment in education for self-care, increased penetration of vaccinations, elimination of vectors and control of sexually transmitted diseases. Investment in such participatory health literacy skill development can help individuals use systems more e ectively and also serve as catalysts for change, when needed, within systems (IOM 2004).

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legal support and agricultural services. In contrast.Net). particularly women. While the service is o ered to both men and women. Women were given a crucial role as ‘infomediaries’ in an e ort to increase their self-worth. health. Pallitathya uses mobile phones to both increase access to information for people living in Bangladesh’s rural areas and to create economic opportunities for underprivileged women. and so on anonymously. availability and cost of health. education information services. their potential to earn and their knowledge about various issues. legal rights. BANGLADESH Launched by Development through Access to Network Resources (D. 86 . The questions are answered by help desk operators at D. The help-line is designed to bridge these various information gaps. Villagers can ask questions about their livelihood. and emergency information dissemination services about disease outbreaks. D. the mobile phone has a 60% geographical coverage in Bangladesh. internet penetration and the inability of many Bangladeshis to use these tools.CASE STUDIES : COMMUNITY INTERVENTIONS 1. such as admission deadlines in di erent educational institutions. violations of human rights and other natural disasters.Net’s headquarters in Dhaka. who are equipped with a database and the internet.Net notes that there is “disproportionate hype around using computers and Internet for tackling issues of economic deprivation and social injustice”. Pallitathya employs ‘Mobile Operator Ladies’ to go from door to door with a mobile phone. Links to health literacy This initiative uses face-to-face contact and information and communication technologies (ICTs) to provide information about services such as: directory services: basic information about location. PALLITATHYA HELP LINE CENTRE. agriculture. The Pallitathya Help-Line Centre was developed after ndings showed that a lack of timely and relevant information was a major bottleneck to rural development and a leading factor in the exploitation of the underprivileged. a key strategy involves using technology to increase women’s access to information and economic opportunity. due to a lack of adequate infrastructure.

com/en/node/132155. perhaps because they are the most deprived in terms of access to information.com/en/drum_beat_344. Furthermore. Finally.comminit. 87 . For more information see http://www. and http://www.Lessons learnt Among the four villages chosen for the research phase.comminit. housewives were the biggest user-group. 21.html item no. the research project found that most queries were in the areas of health (majority of which came from housewives) and agriculture (majority of which came from farmers). the village which had the lowest income level and was the most remote was the most active in terms of making calls to the help-line.

The approach is also designed to strengthen the literacy and communication of vulnerable people. Zambia and Zimbabwe. South Africa. Tanzania. giving them skills to negotiate. open up dialogue within the household and community and participate in taking decisions. the STAR methodology evolved from two participatory approaches: Stepping Stones (SS) and REFLECT (Regenerated Freirean Literacy through Empowering Community Techniques). Ethiopia. improving sexual reproductive health (SRH) and fostering gender empowerment. particularly around HIV/AIDS. It focuses on relationships and communication skills with the intention of reducing HIV transmission. Ghana. Societies Tackling AIDS through Rights (STAR) is designed to be a comprehensive. Nepal. Vietnam. for example demanding appropriate information and services from service providers. India. integrated methodology which combines the strength of participatory learning about HIV and AIDS with empowerment and social change.2. It also intends to help increase the capacity of the economically poor and people living with HIV to advocate for their priorities. SOCIETIES TACKLING AIDS THROUGH RIGHTS STAR Background Operating in Angola. Malawi. especially women and girls. The process includes identifying speci c actions. demanding increased access to testing and a ordable treatment. Gambia. especially around customs and stigma which are considered to fuel the epidemic. SS is a participatory learning package that focuses on relationships and communication skills with the aim of reducing HIV transmission. as well as the identi cation and discussion of problems. Links to health literacy The STAR approach seeks to address misinformation or lack of information on HIV/ AIDS issues and fragmented responses. It is also designed to address issues of gender equity and break barriers to communication by enhancing the capacity of individuals to open up and talk about sensitive issues. for example. Some of the actions are intended to be self challenges to the participants themselves. Bangladesh. This is combined with an approach to adult learning that seeks to enable people to plan their development activities based on the local reality. Liberia. Nigeria. China. Mozambique. 88 . resulting in practical solutions relevant to the local context. Uganda. Sierra Leone. According to the organisers. improving SRH and fostering gender empowerment. REFLECT is a structured participatory learning process that facilitates people’s critical analysis of their environment.

documentation. learning.com/en/node/271534 for more information. Part of the strategy was to facilitate linkage between STAR programmes and other community-based organisations to create mass mobilisation to interact with local government and institutions. choices and behaviours and can have positive and negative impacts on people’s health literacy.Lessons learnt In order to facilitate this process. publications and sharing to wider actors to help scale up the approach.comminit. there was systematic and continuous data collection. the project included the training of community facilitators and community-based organisations. role play and community dialogue were used. Further Information: See ttp://www. in policy advocacy and rights-based approaches to communication and mobilisation. The internet and other media marketplace information sources shape people’s health perceptions. analysis. 89 © Photo by Steve Turner . especially women’s groups. Methods such as drama. According to the organisers.

and group discussions (GDs) with citizen-based organisations (CBOs) and mothers of infants. Links to health literacy The methods used in this research include interviews with mothers of infants 2-4 months old. with mothers of low birth weight infants who were thriving. morbidity status. and nutritional status) in urban slum dwellings of Indore city. Train ‘Basti’ Community-Based Organisations (BCBOs) through pictorial and group discussion. MATERNAL AND NEWBORN CARE PRACTICES AMONG THE URBAN POOR IN INDORE. assessment of under-nutrition amongst infants and newborns. and potential programme options for their improvement. hypothermia and associated danger signs in newborns. accommodating literacy issues. REASONS AND POTENTIAL PROGRAMME OPTIONS The Urban Health Resource Center (UHRC) identi ed interventions to strengthen maternal-newborn care practices and care of infants aged 2-4 months (feeding practices. Early adopters include a progressive early adopter/relative/neighbour/an elder lady of the community. and slumbased traditional birth attendants (TBAs). Madya Pradesh (India). assessment of cold stress.3. Lessons learnt Strategies for supporting mothers and newborns through antenatal care in their home and community settings include: Enable families to perceive the bene ts of appropriate antenatal care practices through persuasive reinforcement of optimal practices by trained slum-based CBOs and involving early adopters as change aides in group meetings/home visits. 90 . what facilitates and what hinders following optimal practices. INDIA: GAPS. to monitor behaviours of mothers and assess their progress. The recommendations are based on ndings from a study carried out by UHRC between December 2004 and February 2006 in 11 out of 79 slums where its Indore Urban Health Program has been operational since April 2003. Encourage families and/or pregnant women to join a health savings fund group from which they can draw money if needed for health care. Also discussed in this report are reasons for following these practices. immunisation status.

Further Information: See http://www. perhaps a take-home pictorial card or poster and persuasive counselling.comminit. Attempt to partner with private medical providers when possible to increase con dence in outreach camps. and group discussions.com/en/node/276695 for more information. Strengthening of linkage of community with a ordable public and private hospitals that are already accessed by slum dwellers. 91 . particularly in the evenings. cutting and tying the cord tie.Establish ‘outreach camps’ for individual appointments. and thermal protection. and b) maintain records of mothers. Strategies for supporting mothers and newborns through postnatal care include: Health volunteers trained in lactation-related counselling to support and encourage mothers. Providing the BCBOs with pictorial material that can enable them to: a) counsel and conduct post-natal visits. Refresher training for BCBOs and TBAs. Speci c strategy for mothers who migrate to native villages for delivery. related to resuscitation.

A COMMUNITY BASED HEALTH EDUCATION PROGRAMME FOR BIO ENVIRONMENTAL CONTROL OF MALARIA THROUGH FOLK THEATRE KALAJATHA . especially in rural areas. traditional art form of folk theatre depicting various life processes of a local socio-cultural setting. transmission and control methodologies. 92 . its symptoms. It is an e ective medium of mass communication in the Indian sub-continent. southern India. Thirty local artists. This method can be used to carry out a community-based health education programme for bioenvironmental malaria control. The role of the community was also a key part of the scripts. Further Information: See http://www. role of anopheles mosquitoes and names of the malaria vectors and the breeding grounds of mosquitoes. follow up control measures by authorities built on the community’s acceptance to bring about needed behavioural changes.4. Lessons learnt Impact assessments held in the focus villages and a random group of villages using semi-structured interviews showed that respondents had signi cantly gained information and knowledge about malaria. Local scriptwriters were involved. writing songs and rupakas (musical dramas) on aspects of malaria. Local media followed up with reporting on the events and key messages. health facilities. the Kalajatha events were performed over two weeks in a malaria-a ected district in Karnataka State. Thus. Links to health literacy In India there is no standard format for delivering health education messages on malaria and conventional methods have limited impact. including signs and symptoms of sickness. processes of transmission. Kalajatha has been used experimentally as a medium of mass communication to assist the malaria control programme.com/en/node/270643 for more information. treatment. actively participated. Although immediate behavioural changes especially in maintenance of general hygiene were not observed. In December 2001.comminit. including ten governmental and non-governmental organisations (NGOs). in community settings. INDIA Background Kalajatha is a popular.

to share information about the course of the disease and possible drug side-e ects. The leader coordinates regular meetings of the TB club at least once a week to provide support for each other in adhering to treatment. the main language of the region. and for those of the community. and using long-course treatment. The District Medical O cer has supplied the TB club leaders with educational materials written in Amharic. health services requested that TB patients living in a particular kebele come to follow-up appointments at the nearest health facility together and on the same day. who is usually literate. and develop the capacity to contribute to their and the community’s development. The TB club approach makes the patients the principal actors in TB control e orts and shows that even in a remote rural area. They then refer tuberculosis suspects and tuberculosis patients failing to make satisfactory progress or su ering from drug side-e ects to the local health facility. The District Medical O cer promoted the development of the TB clubs and provided advice on organisational arrangements. who ensures that all members attend the TB clinic on the appointed day and informs the clinic sta if a member is absent.5. and to help in identifying tuberculosis suspects. This is described as the process by which individuals and families assume responsibility for their own health and welfare. Members of the TB clubs exchange information on tuberculosis with community members through role-playing and public reading and dissemination of educational materials. ETHIOPIA Background TB clubs were initially formed when. ‘TB CLUBS’. Links to health literacy The success of the project can be attributed to community participation. the patients got to know each other and began to form TB clubs. As a result. 93 . The leaders may approach other members of the community for help with encouraging and supporting patients to complete their treatment. Local health workers and community health agents supervise TB clubs regularly and contribute to community education activities and the identi cation and referral of tuberculosis suspects. in an e ort to simplify organisation. The members of each TB club elect a leader. high treatment success rates are achievable through a district TB control programme with community involvement and committed leadership.

Treatment success rates in new sputum smear-positive. See http://www. an economic analysis is necessary to assess whether the patients incurred any nancial costs. the proportion of tuberculosis patients who came for follow-up during treatment at health facilities signi cantly increased after the introduction of the TB clubs. 94 © ICN . Further evaluation of the contribution of the community to tuberculosis control activities in rural Ethiopia through the TB club approach is needed to assess the sustainability of the approach and its feasibility in other settings. TB clubs identi ed 69% of all patients and 76% of new sputum smear-positive pulmonary patients diagnosed in the district. In 1996 other success rates reported in Ethiopia ranged between 35% and 72%. 79% and 81% respectively.comminit. Further Information: Although TB clubs do not incur any extra costs from the perspective of the health service provider. of whom 65% subsequently had a positive diagnosis for tuberculosis.Lessons learnt – Findings According to a report from 2000.com/en/node/269321/38 for more information. smear-negative and extra-pulmonary tuberculosis patients were 83%. The TB clubs referred 181 tuberculosis suspects in the community for investigation.

has seen a signi cant rise in obesity in recent years. is a strand of that long-term strategy. It is estimated that obesity results in over 130. UK Liverpool. an estimated 40% of the adult population is overweight and 20% obese. while tness instructors showed how to use tness equipment and handed out vouchers for free 95 . A pre-launch ‘teaser’ campaign with the strapline ‘We’ve got one million pounds to lose’ generated curiosity prior to the launch and saw local radio stations holding on-air discussions to guess what the advertisements meant. The ‘Million Pound Tanker’. They needed support – not only in practical terms but in feeling that they were not alone. The team commissioned extensive qualitative research into the target audience in order to develop an insight into their everyday lives and understand the motivations and barriers to adopting healthy eating and exercise practices. In September 2008 all was revealed and Liverpool’s Challenge launched with a media campaign that created high levels of awareness and a sense of something ‘big’ happening in the city. Liverpool PCT launched its Healthy Weight: Healthy Liverpool strategy in April 2008. visitors were met by a receptionist and given a goodie bag before meeting with a health professional to have their Body Mass Index measured and receive free. Links to health literacy The project used a community wide initiative to bring a positive framing to weight loss and make information.6. a converted milk tanker. like many UK cities. taking the message out to local people as it toured the city. Inside the tanker. Outside the tanker in the ‘Active Zone’. In the city. support and system navigation easier and more enjoyable for all. devised and managed by Liverpool Primary Health Care Trust’s social marketing team. Liverpool’s Challenge. community food workers gave cookery demonstrations and handed out food samples and cookery books.000 sick and costs the National health Service and the city’s wider economy an additional £20m a year. con dential lifestyle advice. LIVERPOOL’S CHALLENGE. And so Liverpool’s Challenge was created – an innovative challenge to residents to pledge to lose one million pounds of weight. provided the focus for the launch event and was a mainstay of the campaign. with the objective of stopping and ultimately reducing the level of obesity in the city from 2010. ‘Live Zone’ and ‘Food Zone’. The insights developed from analysis and interpretation of the research showed that people wanted to lose weight and become more active but struggled to change their habits.

Local celebrities lent their support throughout. Liverpool Primary Health Care Trust’s social marketing team negotiated partnerships with key local media outlets. For more information contact Julia. Lessons learnt – Initial outcomes The collective nature of the challenge helped people to feel that they were joining a club of like-minded people. but interim evaluation shows that at the halfway point it has exceeded its interim targets. 96 © Liverpool PCT . Research shows high levels of local awareness. and featured a wide range of performances by local community groups from armchair exercises to free-running and yoga. with more than half a million pounds pledged by February 2009. The frequency of the campaign was increased in areas of the city with high prevalence of obesity. cafes and other public venues to keep the Challenge at the front of the public’s minds. with 1. community centres.000 hits. Each community event was run by people from within the community.uk. GP surgeries.500 pledging in the rst week and the website receiving 50. attending ‘tanker’ events. Residents signed up in their thousands.gym or swim sessions. The campaign has advertised in Boots stores (Chemists). providing quotes for the press and attending photocalls. such as health trainers and community food workers. with 13% spontaneous awareness in January 2009 (compared with Weight Watchers 3%). 72% visually-prompted awareness and 58% of participants claiming to have lost weight in December 2009. The campaign is ongoing and will be fully evaluated in early 2010. job centres.Taylor@liverpoolpct.nhs.

employees and society to improve the health and wellbeing of people at work. Workplace health promotion WHO (2008) has de ned workplace health promotion as the combined e orts of employers.5 WORKPLACE SETTINGS The workplace directly in uences the physical. HIV/AIDS or heart disease) or on changing personal behaviours (for example. with speci c health and wellbeing policies and dedicated support for employees to address lifestyle choices. e ort–reward in the workplace and issues related to achieving an appropriate work– life balance. employers can help prevent accidents and lower the risk of industrial or occupational diseases. community and societal factors on employee wellbeing. Non-occupational factors include family welfare. which goes beyond safety issues and acknowledges the combined in uence of personal. workforce health promotion initiatives have moved toward a more comprehensive approach.4. economic and social wellbeing of workers and. It places particular emphasis on improving the work organisation by increasing workers’ participation in shaping the working environment and encouraging professional development. in turn. HPW programmes aim to: 97 . By providing clear and consistent health messages to employees. communities and society. While some health promotion activities in the workplace tend to focus on a single illness or risk factor (for example. organisational. demand–control. and stress factors. mental. In addition to personfocused interventions. such as alcohol and drug use. there is growing appreciation that there are multiple determinants of workers’ health. the health of their families. including job security. WHO has introduced the concept of the health promoting workplace (HPW) as an integrated way of paying proper attention to workers’ health and safety. home and commuting conditions. Health-promoting work environments go further. such as the promotion of healthy lifestyles and non-occupational factors in the general environment. environmental. and community factors (and risks) which a ect workers’ health. It o ers an infrastructure to improve health literacy through educational and health promotional interventions. smoking and diet). Workplace health promotion focuses on a number of factors.

Help workers make healthier decisions and choices for themselves and their families. In uence occupational health and safety programmes so they help reduce worker and community risks.g.g. Reduce workplace-related health risks. heart disease) as part of larger disease prevention and control strategies. Enhance awareness and action regarding protecting health from work-related environmental factors (e. HIV/ AIDS. health screening and assessment of functional capacities.. Use the workplace setting for medical diagnosis. and Link with other community-based activities related to major diseases (e. pollution control). (WHO 2008) 98 .

CASE STUDIES : WORKPLACE INTERVENTIONS
1. PREVENTING HIV/AIDS ON ROAD PROJECTS IN CHINA The Baolong Healthy & Safe Action (BHSA) Project was designed by the Asian Development Bank (ADB) and implemented in Yunnan Province of the Peoples Republic of China (PRC) on the border of Myanmar. Links to health literacy Recognising the HIV risk that the Baolong Highway construction project potentially posed to local communities and construction workers, this project integrates a package of health interventions including: behaviour communication change (BCC) strategies, condom social marketing, advocacy, community mobilisation and HIV prevention. The project sought to reach over 20,000 construction workers in villages and townships along the highway to help prevent HIV/AIDS spread during the construction phase. It was hoped that this strategy could be shared and adapted to other highway construction projects in PRC and elsewhere in the region. Partnerships were developed with a range of stakeholders. For example, the Bureau of Culture supported lm nights in construction sites and local communities; the media communicated HIV and project-related messages through radio, television and newspapers; communication companies developed new strategies such as sending short text messages to highway construction workers; local villages and community-based organisations provided peer educators in entertainment sites and social mobilisers in villages along the highway. The findings In the rst year of implementation the project has reached over 2,000 people for the rst time, 900 people in one-to-one peer education, and over 20,000 people in group and community events. In addition, the Project trained over 300 people to be peer leaders and educators and sold or distributed for free over 80,000 condoms. The ndings of the follow-up survey, which was conducted in August 2006 to evaluate impact after the rst year of implementation, showed the project had limited impact on changing the behaviours of drivers.

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Lessons learnt The BHSA project found that those who are at most risk of HIV are middle managers, evaluators, subcontractors and drivers, all of whom have more disposable income, are more mobile and are more likely to need to socialize and impress their work colleagues. With the exception of drivers, these populations also have more education and knowledge about HIV/AIDS issues but nevertheless reported higher risk behaviours. This emphasises the need for HIV prevention messages to go beyond knowledge and address attitudinal and behavioural change through compelling motivational messages, address issues of peer pressure, and develop skills that support behaviour change. For further information: See http://www.comminit.com/en/node/269706.

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2. ADHERENCE TO ANTIRETROVIRAL THERAPY IN ADULTS: A GUIDE FOR TRAINERS, KENYA Background This training manual was developed for the Antiretroviral Therapy Program in Mombasa, Kenya by the Horizons Program of the Population Council, the International Centre for Reproductive Health and the Coast Province General Hospital, Mombasa. It consists of four modules to be conducted over four sessions of approximately two hours each. Links to health literacy Used in workplace settings this manual aims to provide trainees with a basic understanding of the challenges of Highly Active Anti-Retroviral Therapy (HAART) and adherence to antiretroviral therapy. It is designed for health workers including physicians, clinical o cers and adherence nurse counsellors in antiretroviral (ARV) programmes. The rst module provides a background on adherence to ART and is relevant for all health workers involved in ART service delivery. Modules two, three and four provide detailed adherence management of a patient on ART designed for adherence nurse counsellors. Physicians in particular would bene t from attending the session on Module Two. The objective for each session is given at the beginning. The methodology, the materials required, the expected duration and the handouts are given in the margin at the beginning of each exercise. Handouts for the training use actual patient literacy materials, counselling checklists, pill charts and medication demonstration charts being used in the Mombasa ART programme. Topics include: Preparatory Adherence Counselling; Patient Preparation for Adherence; The Multidisciplinary Adherence Team; HIV Infection and Antiretroviral Treatment; Strategies and Tools to Enhance Adherence. The manual uses di erent techniques in these modules: brainstorming, small group discussion, Power Point presentations, case studies and role-play. Brainstorming, small group discussions and interactive sessions provide an opportunity for a large number of participants to share their views. Power Point presentations are useful in

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Role-play provides practical training in developing adherence-counselling skills. Further Information: The manual is published by Horizons/Population Council and International Centre for Reproductive Health. 102 . See http://www.comminit. Case studies help participants discuss and understand the issues in a practical way. Coast Province General Hospital.com/en/node/184430 for more information.providing participants with the theory and background on the topics being discussed. Mombasa.

be active citizens (for example.4. Furthermore. Furthermore. lack of social protection or universal health care access. They call for society-wide action to address these factors and to reduce di erential exposures to risks. The CSDH does not deal directly with the issue of health literacy in their report. Many experts point to long-lasting consequences for health all over the world. and di erential outcomes of care that poorer people in every country experience on a socially determined gradient. Numerous studies (see section 2 above) demonstrate that poor health literacy skills are associated with a wide variety of negative health outcomes. studies point to clear social class di erences in health literacy skills (Kickbusch et al. The engagement of citizens in policy-making processes is a fundamental democratic principle. di erential vulnerabilities to both acute and chronic disease. national and regional—shape the factors which determine health literacy and health. This guide sees health literacy as a di erential capacity that 103 . and be able to participate in health organisations. To function e ectively in politics and policy-making. community. such as income di erentials. This social health gradient means that each successive social class is worse o with regards to their health than the class just above them. a key trend in many health system reforms is empowerment of patients and the development of more patient-centred care. lifestyles and health-related behaviours or it could lead to a widening of social inequalities and further health literacy disparities. have a vote). Social determinants and health inequities The Commission on the Social Determinants of Health (CSDH 2008) makes a strong case for the root causes of health and health literacy inequities as being based on structural societal factors. The relationship of health literacy to socially determined inequities is an important area for further study. people need the ability to advocate for policy change. be knowledgeable about health rights and responsibilities. The crisis may lead to an opportunity to trigger signi cant changes in social norms. its impact is already being felt unequally between regions and countries (WHO 2009). Challenges Financial crisis The world is confronting a severe nancial crisis at a time when it is also facing major energy and environmental problems and wide social inequalities. 2008).6 POLICY MAKING ARENAS Policies at all levels—institutional. While the crisis has global roots.

association or agency. governmental or non-governmental. Advocacy. public or private. Advocacy assumes that people have rights and that these rights are enforceable: for example. and ultimately their health. applies mainly to policy changes in systems. strategic action that people can take to help transform systems and improve the environments and policies which shape their own and others’ behaviours and choices. ethics and politics. Advocacy often focuses on ensuring that these rights are exercised. Advocacy This guide sees advocacy as an important part of the health literacy skills continuum. A note of caution The recommendations in this section of the guide focus on advocacy approaches in democratic countries. that can in uence individual and community health.results from the same structural factors which the CSDH identi es as underpinning all other health inequities. Importantly. These ‘systems’ include any institution. Enhancing health literacy and improving the health literacy friendliness of key sectors and settings may help address some of the di erential health outcomes of poorer people. respected and addressed. evidence-based. the right to voice opinions openly as well as the right to adequate health care. and/or 104 . and/or governments can and do take action to protect the rights of their citizens. employment and housing. greater awareness of the underlying causes of health inequities will emerge and with it broader support and advocacy action for the societal changes being called for by the CSDH. national or international. advocacy is self-initiated. Advocacy approaches are potentially e ective only in political environments where: policy-makers can be in uenced by public opinion. BOX 9 : A DEFINITION OF ADVOCACY Apfel 2008 Blending science. community. in the process of addressing health literacy needs of individuals in key societal ‘domains of in uence’. as discussed here. pollution-free environments. citizen group.

there is an open and free media through which people can express themselves/ nd a voice (Sen 1990). and from actual and potential economic partners. Where these public freedoms do not exist. as for example during apartheid in South Africa (Sida 2005). Anyone advocating for change in undemocratic environments may be putting themselves at risk and are advised to take a strategic. 105 . It may require action from outside the country. The ICN Guide to Health Professional Advocacy is included as an annex to this report. strengthen links with appropriate international advocacy groups. the most e ective way of changing policy may not be through direct advocacy. where possible. from international agencies. long-term perspective and.

smoking somewhat increased. In 1997 the percentage had fallen to 31%. however. as well as with WHO. In 1972 about 90% of the population in North Karelia reported that they used mainly butter on bread. Elevated blood pressures have been brought well under control and leisure time physical activity has been increased. In the early 1970s.CASE STUDIES : POLICY INTERVENTIONS 1. but from a low level. The dietary changes have led to about 17% reduction in the mean serum cholesterol level of the population. FINLAND The North Karelia Project was launched in Finland in 1972 in response to the local petition for help to reduce the burden of exceptionally high coronary heart disease mortality rates in the area. NORTH KARELIA PROJECT: FROM DEMONSTRATION PROJECT TO NATIONAL ACTIVITY. smoking has greatly reduced and dietary habits have markedly changed. Among the male population in North Karelia. as well as prevention of risky lifestyles in childhood and youth. NGOs. agriculture. similar changes in dietary habits in cholesterol and in blood pressure levels took place. At the same time. In co-operation with local and national authorities experts. Main results The published results of the North Karelia Project show how over the 25-year period major changes have taken place in the levels of target risk factors in North Karelia. schools. food industry. Today it is less than 7%. local media. During the last ten years the decline in cardiovascular (CVD) mortality in North Karelia has been approximately 106 . Among women. The Project included a comprehensive evaluation and has acted as a blueprint for other national and international interventions. This reduction was especially rapid in North Karelia in the 1970s and again after the mid 1980s. etc. Over the years the scope of the project has been broadened to include other major non-communicable diseases and health promotion. supermarkets. innovative media campaigns. now it is common. By 1995 the annual mortality rate of coronary heart disease in the middleaged (below 65 years) male population in North Karelia has reduced about 73% from the pre-programme years (1967-71). the North Karelia Project used interventions involving health and other services. use of vegetables or vegetable oil products was rare. In 1972 52% of middle-aged men in North Karelia smoked.

in turn. This. Furthermore. The decline in heart disease mortality in Finland during the last few years has been one of the most rapid in the world and the overall health of the adult population has greatly improved. Conclusions The results of the North Karelia Project show that a well-planned and determined community-based programme can have a major impact on lifestyles and risk factors.int/hpr/successful. it demonstrates the strength of community-based approaches in changing people’s risk factors as well as giving practical experience in organising such activities. the reduction in CVD mortality has been of the same magnitude as among men.shtml. Among women.prevention. For more information see http://www.8% per year.6. leads quite rapidly to reduced cardiovascular rates in the community.who. 107 . The experiences also actively helped inform comprehensive national action with good results.

advocacy. policy analysis. in uencing key agencies to mainstream HIV and AIDS and gender-related issues into their development work. Links with health literacy SAfAIDS activities are organised around the following core principles: promoting understanding. It works to promote ethical and e ective development responses to HIV/AIDS through knowledge management.2. 108 . capacity development. practice and behaviour of individuals and communities using an evidence-based approach taking into account lessons and best practices. It has also established a Policy Desk whose main purpose is to produce and disseminate HIV and AIDS information to both political and civil society leadership so that they can contribute towards the creation of a conducive HIV and AIDS policy environment. Namibia. while political leadership has largely been left out. Malawi. According to the organisers. online forums. Botswana. disseminating information that is e ective in promoting changes in knowledge. resource centres. Swaziland. Zimbabwe. analysis and focus on the critical impact of HIV and AIDS as a development issue rather than simply as a health issue. promoting the use of multi-sectoral and multi-faceted regional responses and interventions to the epidemic. Lesotho. and promoting the meaningful involvement of people living with HIV and AIDS (PLHIV) in SAfAIDS work in the region. Mauritius. SAfAIDS is a regional non-pro t organisation based in Harare. HIV and AIDS information has been designed for the general public over the years. and research with special emphasis on gender and human rights. Mozambique. South Africa. documentation of best practices and various publications. SOUTHERN AFRICA HIV AND AIDS INFORMATION DISSEMINATION SERVICE SAFAIDS Background Established in 1994 and operating in Angola. Its strategies include use of the media. This created a gap in information levels between the two sections of the population resulting in limited opportunities of engagement to support the development of a comprehensive HIV and AIDS policy and legislative environment. Zambia and Zimbabwe.

net/ for more information.SAfAIDS partnership approach involves working through identi ed strategic partners who will contribute to a multiplier e ect. thereby promoting learning and sharing in a complementary and sustainable manner. ensuring continuity of services and thus sustainability. 109 .safaids. The capacity building approach involves strengthening the ability of partners to provide SAfAIDS products and services to grassroots communities. uniqueness and synergy. SAfAIDS implements its activities through collaborative alliances: increasing diversity. Further Information: http://www.

Links with health literacy The document addresses the policy making arena by posing the questions: 1.” · MDG 8: Develop a Global Partnership for Development – Speakers of several closely-related languages of Vietnam now have a font that is usable on computers and the internet. ultimately earning a university degree in psychology. “Using that knowledge and her skills. [and] he encouraged everyone in his village to plant them. “The new typeface re ects the traditional hand-written Tai 110 . Can the development of minority languages become key to helping people create their own way of successfully meeting the challenges in their lives? 2.” · MDG 3: Promote Gender Equality and Empower Women – A Quechua-speaking Peruvian.” Examples include: · MDG 1: Eradicate Extreme Poverty and Hunger – When a language group helped a Democratic Republic of Congo village chief develop his health literacy skills. Margarita founded a volunteer organization that provides social. Can writing systems for mother tongues and multilingual education become tools for people to build a better present and a better future? 3. He later learned from another booklet about the components of a proper diet. WHY LANGUAGES MATTER: MEETING MILLENNIUM DEVELOPMENT GOALS THROUGH LOCAL LANGUAGES Background Published in the International Year of Languages (2008) by SIL International. Are the long-term results worth the investment of money and time? It uses examples of local language for each of the MDGs to show how “communities are discovering that by using their languages in new arenas of their lives. and again encouraged his community to eat from each food group daily so they could improve their health through nutrition.3. the 16page brochure provides readers with stories about how literacy programmes in local languages are intending to achieve the Millennium Development Goals (MDGs). Margarita. they can begin discovering solutions to the challenges stated in the MDGs. psychological and educational help to hundreds of displaced and sometimes abused Quechua women and children – using the language they understand best. he learned that “soybeans are rich in protein. studied at night to nish her primary education and beyond.

comminit.com/en/node/278103) for more information.” Further Information: See http://www. Scienti c and Cultural Organization (UNESCO)-sponsored workshop in Vietnam in 2006 developed a standardized encoding for the script with input from ethnolinguistic communities in Vietnam and immigrant populations in other countries.Viet script that is used informally in several languages spoken in the northwest provinces of Vietnam and surrounding areas. 111 . Participants at a United Nations Educational. and the Unicode Consortium accepted the resulting encoding proposal. Funding came in part from the Script Encoding Initiative of the University of California at Berkeley.

in particular. DOCUMENTED EXPERIENCES AND INTERVENTIONS Background This 40-page publication from the World Health Organization (WHO) and the Stop TB Partnership describes di erent national experiences in empowering and involving patients with tuberculosis (TB) in the management of their disease. Empowering patients includes motivating. women and other vulnerable groups. designing culturally sensitive informational tools for patient-centred care. for adherence to treatment. It presents the results of a review of the available literature with the intention of identifying possible trends and conclusions and suggesting ways of informing policymakers and further research.” Links with health literacy The document includes strategies for the empowerment of TB patients in their capacity to take control of their own care and lives. organizing TB patients into groups and clubs. including the characteristics of stakeholders. It hopes to inform policymakers.4. These issues must be explored carefully in evaluating and planning the scaling-up process. According to the executive summary: “The review of documented experience covers the means used to enable patients to take more responsibility for their health and. and belonging to vulnerable groups. It describes the operational de nitions of and potential barriers to empowerment and the importance of context. EMPOWERMENT AND INVOLVEMENT OF TUBERCULOSIS PATIENTS IN TUBERCULOSIS CONTROL. incentives. The document analyses what hampers TB treatment. The document points to programmes that recognise these barriers and either focus on overcoming hampering aspects or match speci c interventions for speci c populations. the performance of TB programmes and the burden of TB. or providing loans 112 . ‘patient control’ in TB programmes. including general barriers to accessing health services. particularly for the economically poor. stigmatisation and isolation of and discrimination against TB patients. Methods include peer support by TB patients and cured patients. education about pill taking and advocacy and social mobilisation in support of TB control services. and helping TB patients to use advocacy to improve TB control. informing and enhancing patient economic capacity. counselling. This may take the form of motivational interviewing. a buddy system. so that better decisions are made in the future. ensuring patient-centred TB and general health care.

com/en/node/266449/38 for more information. and psychological and nancial support from former patients. and greater involvement of the TB patients themselves. 113 . Further Information: See http://www. group therapy.or food assistance combined with drug therapy. In concluding. in various structures based on social mobilisation. in order to foster the strength of agency of. the community of persons living with HIV/AIDS. activists for persons living with HIV/AIDS. systematic evaluation of current methods of empowerment. support for adherence to treatment. for example. de-stigmatisation. Self-help groups can be established. and academic institutions – to empower TB patients through: understanding patient motivation and the interventions to stimulate it.comminit. attention to successes that might be scaled up. the document asks for stakeholders – non-governmental organisations (NGOs).

anthropology. Develop policies that support health literacy development. should incorporate communications into their curricula and areas of competence.e. 3. and public health. Where access is denied. 2. Strengthen your own health literacy—engage with formal and informal education systems. including medicine.SECTION 5: MESSAGES TO KEY STAKEHOLDERS General Public 1. Policy Makers 1. 3. Ask and act—seek out information from health providers. Weak health literacy is common and often undisclosed. a ordability and quality require health literacy. systems and other reliable sources. understandable and culturally sensitive ways. advocate for change. pharmacy. Adapt materials. 114 . Health Professionals and Advocates 1. Make navigation easier. Enhance your communications skills.. Professional schools and professional continuing education programmes in health and related elds. Put health literacy on the agenda. forms and signs accordingly. assume everyone has weak health literacy skills and pay careful attention to all communications. nursing. 2. Recognise the importance of strengthening health literacy and that improvements in health equity. 2. social work. Approach health literacy with ‘universal precaution’: i. Use your professional associations and cultural authority to catalyse policy and structural changes needed to strengthen people’s skills and systems’ healthy literacy friendliness. Create health literacy friendly health care settings. 4. Advocate for system change where needed. Fund necessary research. 3. dentistry. Provide information in accessible. Support others—join forces with others in patient associations or community groups seeking enhanced alignment between skills and demands.

writing. 115 .Researchers 1. 3. Develop and test assessment tools which can measure skills and abilities and demands and complexities. No current measures of health literacy include oral communication. 2. and (4) cultural di erences in approaches to health and health care. Use all formal and informal settings to teach health literacy. (2) lack of background knowledge in health-related domains. Evaluate interventions. There is a need for more intervention-based evaluations with guidance on e cacy and e ciency. 3. Educators should take advantage of all opportunities to transfer relevant health-related information. (3) lack of familiarity with language and types of materials. such as biology. 2. Pay attention to di erent needs throughout the lifespan. advocacy and citizenship skills and none measure the health literacy demands on individuals within di erent contexts. Educators 1. Current assessment tools and research ndings cannot di erentiate among (1) reading ability. There is a need to develop more nonreading solutions. Develop causality models that can explain the relationships between skills and demands at di erent life stages and in di erent settings. recognising that addressing health literacy goes beyond better-written communications. Use new approaches and technologies.

3. Both must be measured. Measure the alignment of skills/abilities with task demands/complexity. Identify and monitor indicators that will re ect progress toward aligning skills with demands. Make health literacy skills an essential element on school agendas. Identify and communicate essential information and desired behaviours in an accessible. Support improvements in education and information access. Assess health literacy among your target populations. Include health literacy on your action agenda.SECTION 6: BUILDING NATIONAL AND LOCAL HEALTH LITERACY ACTION PLANS 1. What gets measured gets done. Measure skills and abilities on multiple levels. Sensitize and train providers. 116 . Identify the speci c health demands/tasks for targeted health actions. The goal is for both to be ‘health literate’. Help people access and evaluate reliable sources for health information. Understand and simplify navigational demands. Help children and adults opt for healthy choices in everyday life. Recognise the problem and its significance. Individual level: reading assessment tools Community level: geo coding mapping Population level: household surveys Measures of Skills and Abilities 2. understandable and culturally sensitive way. Build health literacy friendly systems that better align demands with skills.

implementation and evaluation. The real experts in health literacy are those with trouble understanding what they must do to take care of their health. Set. 117 . Tasks: How complex are they? Information: Is it understandable? Navigation demands: Can they be simpli ed? Measurements of Demands/ Complexity 5.4. Engage with members of your target population at all stages of planning. measure and evaluate goals for improved alignment of skills/ ability with task demands/complexity.

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ANNEX 1 ICN HEALTH ADVOCACY MANUAL PROMOTING HEALTH ADVOCACY GUIDE FOR HEALTH PROFESSIONALS INTERNATIONAL COUNCIL OF NURSES 128 .

WHCA gratefully acknowledges support from WHO Healthy Cities Programme Liverpool. the International Alliance of Patients’ Organizations and Johnson & Johnson in the production of this publication. .

United Kingdom Tel.whcaonline. BS26 2HD. & Fax: +44 (0)1934 732353 e-mail: franklin@whcaonline. Compton Bishop. Axbridge. Somerset.World Health Communication Associates (WHCA) World Health Communication Associates Ltd Little Harborne. Church Lane.org .org Website: www.

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