Social Inclusion Information System in the Context of Nepalese Public Health Informatics (concept paper

)

For Workshop on Disaggregate (social inclusion and marginalized group) Data System Organised by: Department of Health Services Teku, Kathmandu, Nepal

Prepared by Dhruba Raj Ghimire Susheel Chandra Lekhak May 2009

Table of Contents

Introduction What is social inclusion Who and how socially excluded Impact of social exclusion/inclusion Relation between social inclusion and health Need and Importance of social inclusion data Difficulty in measuring social inclusion Proposed indicators for social inclusion information system Proposed social inclusion information system References

1 4 6 8 8 10 11 12 13 16

Introduction
The concept of social inclusion in the field of development administration is relatively new aspect. As O'Brien & O'Brien (1996) documented, international network of people working to reverse the exclusion of people with physical, sensory and learning disabilities began to form in the 1970s and 1980s. According to Stegeman & Costongs (2003), the first use of the term has been attributed to Lenoir, the French Secretary of State for Social Action in Government in 1974. The root of social inclusion in Nepal can be traced in Sixth Plan (1980 – 85), in this plan women's development was incorporated. Subsequently, identification of 16 deprived groups in 1994; incorporation of sections on indigenous groups and downtrodden community; formulation of National Committee for Development of Nationalities (NCDN) in 1997; formulation of Committee for Upliftment of Downtrodden, Oppressed and Dalit Classes (CUDODC) in 1997; upgrading of NCDN to National Foundation for Development of Indigenous Nationalities (NFDIN), establishment of National Women commission (NWC) and National Dalit Commission (NDC) in 2002; Road map policies on economic and social transformation in 2003; Committee on Reservation Recommendation, and policy announcement on job reservation in 2004. Those institutional arrangements made shows that though government has identified the need to empower and facilitate the different excluded groups but the approach seem to be piece meal in nature instead of adopting holistic approach. In the words of Dr. Gurung, in a paper on Social Inclusion and Nation Building in Nepal, all these measures except NFDIN had no legislative foundation and are inherently ad hoc and unstable. Socially inclusion agenda became main agenda of the government after the popular people's movement of 2006, especially to build a just and
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prosperous an equitable society eliminating the caste-wise, regional and gender-based disparities long-rooted in Nepal. It is legitimised in the Interim Constitution 2007. Three Years Interim Plan (TYIP) aims to contribute for sustainable peace by means of reducing unemployment, poverty and inequality in the country. TYIP has considered social inclusion as one of the six strategic pillars. Interim plan has the policy of improving the living standard of women, dalits, indigenous nationalities/peoples, madhesis, disables, and the poor. The need of disaggregated data (social inclusion data) has been emphasised by Subba (2008) in his presentation paper, in his own words: "according to Nepal Demographic and Health Survey, 2006 maternal mortality ratio has been decreased to 281 per 100,000 live births from the level of 539 in 1996. Similarly, child, infant and neo-natal mortality rates have also substantially been reduced. Gender, caste and ethnicity disaggregated data are not available and so, it is difficult to see which section of society benefited most from health services." To fulfill the informational need for inclusive policy, strategic and operational planning there is high demand of socially disaggregated data. Before fiscal year 2064/65 (2007/08) HMIS is collecting disaggregated information by age and sex in some public health data/information reporting, but that disaggregating is not sufficient to analyse the situation of exclusion. In fiscal year 2064/65 (2007/08) HMIS has revised all recording and reporting tools used by system. In this revision, an additional column has been added to codify the caste/ethnicity group of the user in each recording tool. This codification prepared base for the collection of social inclusion data from existing routine HMIS. During the Annual Work-plan Progamme and Budget (AWPB) preparation, numbers of consultative meetings were held between UNICEF and HMIS, where felt the need of disaggregated data in immunization to adopt a strategic plan to meet the universal coverage.
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To fulfil this gap HMIS has initiated a project to pilot disaggregated information system in 10 districts and UNICEF is ready to support this project. To implement the project, number of preliminary meetings has been organized in between HMIS and UNICEF. Those meetings have identified need of a conceptual framework which will guide this project execution as well as future plan of action. To address the issue this concept paper has been prepared, where we have tried to sketch out a complete framework for the social inclusion information system in context of Nepalese public health informatics. This concept paper is prepared to guide and provide base for the development and expansion of the project in health sector of Nepal.

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Before developing conceptual framework for social inclusion information system in health sector, we need to know about what social inclusion means, who and how socially excluded, what may be consequences or impact of social exclusion, what is the relation between social exclusion and health, what is the importance of social inclusion data in health sector. So this paper will first put highlight on the areas mentioned above. This paper further explores the difficulties in measuring social inclusion, suggests some indicators that might be useful from the social inclusion perspective in health sector and accordingly a comprehensive information system to provide information on the proposed indicators. This proposed system will not only intends to propose a system which will provide information on the indicators mentioned rather it concentrate to propose a comprehensive platform of information system which will be able to identify, capture, process, analyse, and disseminate necessary information related with social inclusion issues in health sector effectively and efficiently.

What is social inclusion
Social inclusion is defined differently by different scholars, in different contexts and social conditions. The term 'social inclusion' is complex to define. Social inclusion is multi-dimensional in nature, due to which there is difficulty in reaching agreement on the universal definition of the term. Social inclusion concept can be better understood after describing exclusion. It is defined by DFID as "Social exclusion describes a process by which certain groups are systematically disadvantaged because they are discriminated against on the basis of their ethnicity, race, religion, sexual orientation, caste, descent, gender, age, disability, HIV status,
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migrant status or where they live" (DFID 2005). Similarly according to Cappo (2002) "Social exclusion is the process of being shut out from the social, economic, political and cultural systems which contribute to the integration of a person into the community." So from the above definition we can conclude that some people, group, communities and areas are systematically disadvantaged to enjoy the socio-economic, political and any other services offered by the state. Social inclusion is a process by which those disadvantaged groups be able to enjoy the services rendered by state without any discrimination. Social inclusion leads social integration and helps to reduce poverty rapidly. In another word social inclusion is a process to make all citizens able to achieve the basic level of well being. In the own words of Sen (2001) “(social) inclusion is characterised by a society’s widely shared social experience and active participation, by a broad equality of opportunities and life chances for individuals and by the achievement of a basic level of well-being for all citizens.” According to Cappo (2002) "A socially inclusive society is defined as one where all people feel valued, their differences are respected, and their basic needs are met so they can live in dignity. (Quoted in VicHealth Research Summary 2) "Social exclusion is a multidimensional process of progressive social rupture, detaching groups and individuals from social relations and institutions and preventing them from full participation in the normal, normatively prescribed activities of the society in which they live" (Silver, 2007). Operationally, Social Inclusion is the removal of institutional barriers and the enhancement of incentives to increase the access of diverse individuals and groups to development opportunities (World Bank, 2002).

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Social inclusion requires improvements in incentives and capacity within different level of organizations so that these organizations can and will respond equitably to the demands of all individuals – regardless of their social identity. In socially inclusive system, the individual’s identity as a citizen trumps all other identities (e.g. gender, ethnicity, caste, religion, income level and geographical identity) as a basis for claims for state services and commitments (e.g. justice, social service provision, investment in public infrastructure, police protection) through the constitution and legal system. From the above discussion we can conclude that social inclusion is the process how people, group, communities are included in the mainstream of society or able to enjoy their rights without any discrimination. Social inclusion process empowers and facilitates excluded people to access, utilize, participate and control health related decisions by eliminating the socio-economic, political and legal barriers that excludes them changing policies, rules, regulations, process, procedure, project, programmes and practices.

Who and how socially excluded
According to Orr (2005) an individual is socially excluded in case two conditions are met – 1) the individual is not participating for reasons beyond his/her control, and 2) he or she would like to participate. There are number of problems that are contributing social exclusion, those are different in different societies. Among them some can be listed as below: • Unemployment, • Poor educational attainment,
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• Ill Health (mental health problem, disability, HIV/AIDS etc.) • Low income, • Crime, • Remoteness, • Gender, • Language, • Caste, • Religion and culture etc. DFID's policy paper on reducing poverty by tackling social exclusion, 2005 has identified women and girls were excluded, this paper further adds that people are discriminated on the basis of age, case, descent, disability, ethnic background, HIV or other health status, migrant status, religion, sexual orientation, social status or where they live. As Nepal being multi-cultural, multilingual, multi-ethnic and multireligious communities there is higher chances of social exclusion and number of difficulties to bring them in the national development mainstream. According to Subba (2008) "the large share of national population has been excluded on the basis of gender, language, caste, religion and culture limiting their access to social space, productive resources and national governance." In each society some groups are socially excluded, however the groups affected and the degree of discrimination vary from one society to another. The 4th report on assessment of implementation of Poverty Reduction Strategy Paper (PRSP) identified the dimensions and basis of exclusion in Nepal, those are - a) Caste/ethnicity (Dalits, Janajatis, other minorities); b) Gender (Women and girls); c) Location (Remote areas); d) Income Poverty (The vicious circle). In this report Women, Dalits and Janajatis and people of remote areas were identified as the most disadvantaged.

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DFID emphasised to focus on the understanding of the processes by which people are excluded, which will help to tackle social exclusion. Institutions and behaviour that reflect, enforce and reproduce prevailing social attitudes and values, particularly those of powerful groups in society was regarded as a basic cause of exclusion. This paper broadly identifies two ways of exclusion - one is deliberate and another is rigid social systems and prejudices of their society.

Impact of social exclusion/inclusion
Social exclusion is a complex issue or phenomenon. This threatens the wellbeing of both individuals and their communities. DFID has identified the outcome of social exclusion as – poverty; reduces productive capacity; increases level of economic inequality in society; and leads to conflict and insecurity. Similarly, according of European Union (1993) social exclusion causes segregation or the weakening of traditional forms of social relations and leads towards the risk of a dual fragmented society. Social inclusion intends to bring the system-level institutional reform and policy shift to remove inequities in the external environment (DFID 2004). Therefore the process of social inclusion not only maintains peace and harmony in the society but also empowers/facilitates excluded groups so that they can better contribute for the rapid societal development.

Relation between social inclusion and health
Emphasis on good health and equal access to medical services is critical to human development and to achieving political, economic and social

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objectives. Reducing equity gaps and increasing social inclusion in health together create the basic conditions necessary for improving the health status of the poorest people.

Figure 1: Relation between poverty, health and social exclusion, adapted from Stegeman & Costongs 2003 There is close relationship between the poverty, health and social exclusion. This is similar to that of the vicious cycle of poverty. Poor health leads toward poverty and exclusion. Similarly, poverty also diminishes health and leads social exclusion. At the same time socially excluded people are unable to access and utilize the health services and leads toward poverty. In a concept paper on Social capital formation in Nepal: MDGs and social inclusion Dr. Subba has emphasised the need to improve equitable access to the quality health services as per the spirit of Interim Constitution ensuring fundamental right of the people to get basic health service free of cost. According to him, there is a need to realize the rights to and delivery of universal access to essential health care mobilizing more human resources to remote districts to deliver quality services, particularly services for mothers and children, family planning, and HIV/AIDS.

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One example that is relevant in term of health is delay in decision making, one of three delays causing maternal death. Delay in decision making to carry obstetric complication cases to health facility is a major cause of maternal death in Nepal. The family has to wait for the decision by the head of the family or husband to carry her to health institution. This sort of traditional social behaviour is excluding pregnant mothers to entertain the right to utilize health services provided by the state. From the above discussion, we can conclude that social exclusion not only reduces social integrity and hampers overall national development but also increases mortality by deteriorating personal health.

Need and Importance of social inclusion data
Further Analysis of the 2006 Nepal Demographic and Health Survey entitled Caste, Ethnic and Regional Identity in Nepal showed the wider gap in the utilization of available health services by different caste groups in Nepal. Percentage of deliveries in a health facility ranges from 5 percent to 70 percent by Terai/Madhesi Dalit and Terai/Madhesi Brahman/Chhetri ethnic/caste groups respectively. The situation is similar in the case of assistance by skilled birth attendent during delivery which ranges from 5 to 70 percent in the above mentioned ethnic/caste groups. According to Subba (2008), in Nepal, most of the MDGs could be met at the national aggregate level, efforts are needed to reduce the regional, ethnic and gender based inequality in the achievement of these goals. He has emphasised the need of pro-poor growth process, mainstreaming gender equality, empowerment and social inclusion agenda in all the sectors and localization of MDGs is a most to address
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regional, ethnic and gender disparities in the achievement of these goals. This shows the need of disaggregated data to measure the MDGs. He has indicated that the socio-economic indicators of some of the disadvantaged indigenous nationalities are very low compared to the national averages. According to him this is due to the low access of these communities in productive resources, state delivered goods and services and also due to structural barriers to the access of these groups to national policy and decision making levels. In his paper he has mentioned that the health services are not adequately targeted for Madhesi women. From the above discussion we can conclude that there is need of disaggregated data/information on the major health indicators. This system will capture data/information on the access and utilization of health services by the socially excluded groups. At the same time there is need of information to be collected on the level of participation in health related decision process and factors hindering for access, utilization, participation and control to enjoy their rights guaranteed by constitution without any discrimination. The availability of social inclusion related data in health sector can facilitate the local level planning to improve the health status of the people and can significantly contribute to meet the MDG, national targets for different health services.

Difficulty in measuring social inclusion
Measurement of social inclusion is as complex as the definition of social inclusion. As social inclusion is being multi-dimensional in nature it is

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so to measure. At the same time subjective and objective domain of social inclusion makes it more complex to measure. Need of qualitative analysis more than the quantified analysis in social inclusion also makes social inclusion measurement more difficult.

Proposed indicators for social inclusion information system
• • Access to basic primary health care services by excluded groups Percentage of people who have utilized health care services at Hospitals, PHC, HP, SHP by excluded groups Percentage of members at Health Facility Management Committee (HFMC) representing excluded groups of society Percentage of Female Community Health Volunteers (FCHV) from excluded groups among total FCHVs Mortality Rate (maternal, under five, infant, neonatal) in different excluded groups Proportion of baby with low birth weight among different excluded groups Suicide rate HIV prevalence among 15-24 year old pregnant women Number of rules and regulations discriminating people on the ground of health problems

• • •

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Number of social practices discriminating people on the ground of health problems

Proposed social inclusion information system
From the system perspective an information system should take input (generally data) from different sources, then process into necessary information (analysis in particular context) and provides as an output to the users as per shown in the figure below:
Managers EDPs, I/NGOs Researchers General people Web-portal Census, research, survey, routine information system Input Process

Output

Figure 3: Information system This system should capture, process and provide access to information on access, utilization, participation and control over the health services and decision process. This system will capture information from census, research/surveys and from routine information system. A comprehensive social inclusion information system needs to be developed, so that it will facilitate decision making process at different levels of health system. For this purpose in addition to information on above areas it will also capture data/information on input, process,
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output, outcome and impact of social inclusion programme, projects or interventions at different levels. The information system should be developed to provide the subjective and objective information on social inclusion on health services. This system should provide information on access and utilization of health services by remote people, excluded caste/ethnic groups, income level and gender etc. This should also cover the information on the causes of exclusion or barriers in health services by excluded groups. Social inclusion related information needs to be collected in the major health indicators from census, surveys (NDHS) like total fertility rate, mortality rate, disease burden etc. Similarly, information on the people, group, communities which are excluded in the mainstream of society due to health related problem (due to deformity, stigma etc.) also needs to be collected systematically.

Sy ste tio n

m

ys ve ur S

Process

Ro uti ne Inf or ma

Health service as a right

Census

Discrimination due to health problems

Figure 2: Social Inclusion Information System

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• Access • Utilization • Participation • Control • Exclusion due to health problems

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Social Inclusion deals with the ways by which social exclusion can be overcome. These can include changes in law, changes in the policies and practices of organizations and institutions, support for communities, provisions and appropriate or improved services, increasing employment and educational or training opportunities and improvements in access to services (Lothian Anti Poverty Alliance, 2001). This system should also provide the information on the change in laws, policies and practices of health institutions for improvement in access to health services. This information system will take input from census, research, survey and from routine health management information systems and process it to make understandable in the particular context for decision making as well as for research purpose. The following figure shows the proposed information system for social inclusion in context of Nepalese public health informatics.

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References
Bennett, Lynn, Dilli Ram Dahal and Pav Govindasamy, 2008. Caste, Ethnic and Regional Identity in Nepal: Further Analysis of the 2006 Nepal Demographic and Health Survey. Calverton, Maryland, USA: Macro International Inc. DFID Nepal Country Assistance Plan (CAP), Feb 2004. European Commission Green Paper on European Social Policy Options for the Union 1993:20-1 Ministry of Health and Population (MOHP) [Nepal], New ERA, and Macro International Inc. 2007. Nepal Demographic and Health Survey 2006. O'Brien & O'Brien, 1996 (cited in Learning About Mental Health Practice, Theo Stickley and Thurstine Bassett, Published by John Wiley and Sons, 2008) Orr, Shepley W., 2005, Social Exclusion and the Theory of Equality:The Priority of Welfare and Fairness in Policy, Centre for Transport Studies, Department of Civil and Environmental Engineering, University College London Reducing poverty by tackling social exclusion, A DFID policy paper, Published by the Department for International Development, September 2005 Resilience Amidst Conflict: An Assessment of Poverty in Nepal 1995-96 and 2003-04, CBS/World Bank/DFID/ADB, September 2006. Sen A. Development as Freedom. Oxford University Press, 2001 Silver, Hilary. Social Exclusion: Comparative Analysis of Europe and Middle East Youth. Middle East Youth Initiative Working Paper (September 2007).
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Social Analysis Sourcebook: Incorporating Social Dimensions into Banksupported projects, (working draft) August 2002, p.2, Social Development Department, World Bank, Washington.D.C. Social Inclusion and Nation Building in Nepal, paper presented by Dr. Harka Gurung at Civil Society Forum Workshop for Research Programme on Social Inclusion and National Building in Nepal, organised by Social Inclusion Research Fund. Stegeman, Ingrid & Costongs, Caroline. Health, Poverty and Social Inclusion in Europe. EuroHealthNet. 2003 Subba, Chaitanya. 2008. Social capital formation in Nepal: MDGs and social inclusion. Walker, Alan & Wigfield, Andrea. The Social Inclusion Component of Social Quality, 2004 www.correlation-net.org www.darlington.org.uk www.health-inequalities.eu www.health-inequalities.eu www.library.nhs.uk www.mobilityagenda.org www.sochealth.co.uk www.socialinclusion.org.uk www.undp.sk

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