See discussions, stats, and author profiles for this publication at: https://www.researchgate.

net/publication/220889445

Preferences for health information and decision-making: Development of the

Health Information Wants (HIW) Questionnaire

Conference Paper · January 2011

DOI: 10.1145/1940761.1940799 · Source: DBLP

CITATIONS READS

9 769

3 authors, including:

Bo Xie
University of Texas at Austin
102 PUBLICATIONS   2,673 CITATIONS   

SEE PROFILE

Some of the authors of this publication are also working on these related projects:

The Health Information Wants Project View project

eHiLL-electronic health information for lifelong learners View project

All content following this page was uploaded by Bo Xie on 12 November 2016.

The user has requested enhancement of the downloaded file.

 Preferences for Health Information and Decision-making:
Development of the Health Information Wants (HIW)
Questionnaire
Bo Xie Mo Wang
College of Information Studies Department of Psychology
University of Maryland University of Maryland
College Park, Maryland College Park, Maryland
1-301-405-8671 1-301-405-5926
boxie@umd.edu mwang@psyc.umd.edu
ABSTRACT
The Health Information Wants (HIW) Questionnaire was
developed to measure 1) a broad range of the types and amount of
each type of information health consumers want to have in dealing
with health-related issues; and 2) the degree to which health
consumers want to participate in each type of decision-making in
each corresponding area. With parallel items in each
corresponding area of information and decision-making, this
instrument can reveal the relationship between information and
decision-making preferences in each area. This paper reports the
multi-stage development process of this instrument that lasted for
over two years. This process included: 1) a grounded theory-
driven exploratory study that identified the core framework; 2)
initial item development based on the literature and the
exploratory study; 3) content validity testing; 4) cognitive testing;
and 5) a pilot study testing the psychometrics of the instrument.
Categories and Subject Descriptors
J.3 [Life and Medical Sciences]: health, Medline.
General Terms
Measurement, Theory.
Keywords
Health information, decision-making, health information wants
(HIW), instrument development.
1. INTRODUCTION
Recent shift from the paternalistic to the informed or shared
decision-making models in health care [1-4] has generated much
interest in patients’ preferences for information (i.e., the interest in
seeking health information) and preferences for decision-making
(i.e., to what extent one wishes to play a role in making health
decisions) [5]. There is strong evidence in the literature showing a
lack of correlation between preferences for health information and
Permission to make digital or hard copies of all or part of this work for
personal or classroom use is granted without fee provided that copies are
not made or distributed for profit or commercial advantage and that
copies bear this notice and the full citation on the first page. To copy
otherwise, or republish, to post on servers or to redistribute to lists,
requires prior specific permission and/or a fee.
iConference2011, February 8-11, 2011, Seattle, WA, USA.
Copyright © 2011 ACM 978-1-4503-0121-3/11/02…$10.00.
273
Robert Feldman
Dept. of Public and Community Health
University of Maryland
College Park, Maryland
1-301-405-2519
rfeldman@umd.edu
decision-making: while health consumers are universally and
overwhelmingly interested in having detailed information, only to
a much less extent and with greater variation do they want to
participate in decision-making [6]. Several factors are reported to
be predictive of the low level of interest in participation in
decision-making, including: the severity of illness, the role of
being a patient, cultural norms and expectations, socio-
demographic factors, and personality [7]. Despite these attempts,
still, at least 80% of the variability remains unexplained [5, 8, 9].
Further research is needed to better explain the widely reported
discrepancy between these two types of preferences.
2. EXPLORING THE DISCREPANCY
A careful examination of how health information and decision-
making preferences are measured in commonly used instruments
reveals important and yet previously neglected phenomena, which
shed new light on the widely reported discrepancy between
preferences for information and decision-making. On the one
hand, the types of health information as measured in these
instruments cover a broad range of areas: Several widely used
instruments [8, 10-16] all include items to measure preferences for
information about treatment and specific disease, which, as
reported in two review articles [17, 18], are the two most
important types of information needs. Information about
laboratory test/medical exam is also measured in the majority of
these instruments [8, 10, 13-15]. Some instruments also measure
information about physical/self-care (e.g., information about how
much time to take off from work to relax [13-15]) and the
psychosocial aspects (e.g., information about where to obtain
assistance in coping with feelings and social concerns arising
from a disease or treatment [13, 14]).
On the other hand, however, measurements of the types of
decisions cover a narrow range – most of them focus on treatment
decision-making while other types of decisions are understudied
(i.e., decisions about whether/when to have a lab test/medical
exam and physical/self care) or completely missing (i.e., decisions
about diagnosis and psychosocial coping). The Control
Preferences Scale (CPS) [19], Krantz Health Opinion Survey
(KHOS) [10], and Information Styles Questionnaire (ISQ) [11]
focus predominantly, if not exclusively, on treatment decision-
making (e.g., “I prefer to make the final selection about which
treatment I will receive”; CPS). The Autonomy Preference Index
(API) [8] and Locus of Authority Scale (LAS) [15] measure a
broader range of decision-making than the CPS, KHOS and ISQ;
still, their focus is disproportionally on treatment decision-
making. The exclusive or predominant focus of these commonly
used instruments on treatment decisions is not surprising, given
that “decision-making” seems to mean, by default, “treatment”
decision-making to medical professionals [e.g., 3, 4].
The complete absence of the diagnostic and psychosocial types of
decision-making from all five of these commonly used decision-
making instruments deserves serious attention. Psychologists have
long recognized that people want information about a stressful
event (e.g., a medical condition) in order to make decisions about,
for instance, how to control their emotions/anxiety and to cope
with the situation [20-24]. Including this type of decision-making
may help to explain why patients would want the seemingly
“excessive” information that they would not need to make
treatment decisions. As for diagnostic decision-making, it might
not be necessary in the past to include this type of decision-
making as few patients would have access to information needed
to make a diagnostic decision. However, this may have to be
changed as Internet research has shown that, as one of the many
ways that Internet use affects health care, notable number of
people has begun to make their own diagnostic decisions based
upon the information they obtained online [25, 26].
These types of measurements of information and decision-making
are summarized in Table 1 below.

Table 1. Types of health information and decision-making measured in existing instruments

Type of health information/decision-making measured
Treatment Disease- Lab test/medical Physical/ Psycho-social
specific exam self-care aspects
Instrument (information)
API-Information preference subscale [8] X X X
KHOS-Information subscale [10] X X X
ISQ-Information needs subscale [11] X X
Patient Information Need Questionnaire (PINQ) X X X X
[12]
Toronto Informational Needs Questionnaire-Breast X X X
Cancer [13]
Information and Support Needs Questionnaire X X X X X
(ISNQ) [14]
Desire for Medical Information Scale (DMIS) [15] X X X X
Information Needs Questionnaire (INQ) [16] X X X
Instrument (decision-making)
Control Preferences Scale [19] X
KHOS-Behavioral involvement subscale [10] X X
Participation preference items in ISQ [11] X
API-Decision-making preference subscale [8] X X X
Locus of Authority Scale (LAS) [15] X X X

This interesting but previously neglected contrast between what is
measured in information and in decision-making raises important
questions: Could the widely reported discrepancy between
information and decision-making preferences be a result of
measurement differences? Might there be important types of
health decisions that health consumers want to make by using the
information they have obtained; yet, these other types of health
decisions are insufficiently captured by existing instruments,
which led to the findings of lower level of desire for participation
in decision-making than that for information?
These questions need to be examined carefully because they have
implications for health care knowledge and practice. If further
research could provide affirmative answers to these questions,
then health care researchers and practitioners would need to adjust
our mindset dramatically in order to better accommodate patients’
desire for participation in a broad range of decision-making. Even
if further research could not provide positive answers, the result in
itself would still be important because we would then be able to
have more confidence in stating that patients’ desire for
participation in decision-making was indeed low – and that it was
not due to a measurement bias in under-detecting important types
of decision-making.
3. DEVELOPING THE INSTRUMENT: A
MULTI-STAGE PROCESS
Towards this direction, the HIW Questionnaire was developed to
identify 1) a broad range of the types and amount of each type of
information health consumers want to have in dealing with health-
related issues and 2) the degree to which health consumers want
to participate in each type of decision-making in each of the
corresponding areas. The development of the HIW Questionnaire
entailed a multi-stage process that lasted for over two years. The
process features 1) a grounded theory-driven [27] exploratory
study [7] that identified the underlying framework: the HIW
framework; 2) initial item development based on the literature and
the exploratory study; 3) content validity testing; 4) cognitive
testing; and 5) a pilot study testing the reliability and validity of
the instrument.
3.1 Stage 1: Development of the framework
The exploratory study [7] identified the concept of Health
Information Wants (HIW), which is defined as “health
information that one would like to have and use to make
important health decisions that may or may not be directly related
to diagnosis or standard treatment” [7, p. 514]. This concept
explicitly situates information and decision-making preferences in
relation to one another. Four types of HIW were subsequently
identified:

274
• Type 1 (Basic HIW): very general, basic information about
specific diseases and treatments; it is used to make decisions
about how to cope with psychosocial feelings/concerns;
• Type 2 (Advanced HIW): detailed information about specific
diseases and standard treatments; it is used to make decisions
about how to interact with health care provider to understand
and monitor a diagnostic or treatment decision;
• Type 3 (Complementary HIW): information about
complementary/alternative treatments to make decisions
about a complementary/alternative treatment; and
• Type 4 (Provider-related HIW): information about providers
to make decisions about which provider to choose.
The HIW framework provides a fresh approach to explaining the
widely circulated but previously largely unexplained discrepancy
between health consumers’ preferences for health information and
decision-making. This fresh approach rests on two key
assumptions: 1) from the health consumer’s perspective, decision-
making is a spectrum that includes not only treatment but also
other important types of decision-making (that were previously
understudied), and 2) a desire for different types of health
information is associated with a desire for different types of
decision-making (i.e., different types of information is wanted for
use in making different types of decisions).
3.2 Stage 2: Initial item development
Prior research has examined five major types of health
information (Table 1 above). Two of these types are missing from
existing decision-making measurements: decision-making about
specific disease (diagnostic decision-making) and psychosocial
coping. Because the Xie study [7] and Internet studies [25, 28-33]
indicate that these two types of decision-making are also
important, they are included in the HIW Questionnaire (note that
the psychosocial type corresponds well with the Type 1 HIW
category and the other four types all fall in the Type 2 HIW
category as reported in the Xie study). Research on Internet users’
desire for health information and decision-making [25, 26, 34]
reveals two other major types: information/decision-making about
complementary/ alternative treatments and health care providers
Table 2. Definitions of the eight subscales of the HIW Questionnaire
Subscale Part 1: Information Preference Questionnaire
Treatment Information about the rationale, mechanism, and
(conventional) implications of a conventional method used to
control a health condition
Health condition- Information about the description, process and
specific prognosis, and implications of a health condition
Laboratory test Information about the rationale, process and
interpretations associated with laboratory tests or
medical exams to diagnose or monitor a health
condition
Self-care Information about a) the rationale and procedure of
my own physical and dietary actions needed to
maintain health, prevent disease, or control a health
condition, b) potential impact of the health
condition on my work and daily life, and c) signs
and signals indicating when I should seek
professional care
Complementary Information about possible complementary or
/alternative alternative treatments for a health condition
275
(which are identified in the HIW framework as Type 3 and Type 4
HIW, respectively). Internet research shows a trend in seeking
information/making decisions about health insurance/policy (e.g.,
Medicare). Because of our interest in exploring the impact of
Internet use on health information and decision-making
preferences, this type is included in the HIWQ as well. Thus, the
development of the HIWQ started with these eight types of
information and decision-making: Treatment; Diagnosis;
Laboratory test; Self-care; Complementary/Alternative treatment;
Psychosocial; Health care provider; and Health insurance/policy.
Items were created to represent the construct domain in each of
the eight sub-scales within both the information dimension and
the decision-making dimension. Boundaries of the construct
domain were specified with direct connection to the literature and
the exploratory study [7]. First, the first author developed a total
of 47 initial items that each fell into one of the eight subscales.
The three authors then discussed these items together. The
discussions were driven primarily by two considerations: to merge
similar items, and to generate parallel items for the information
and decision-making parts of the questionnaire. Some information
items in the initial list (e.g., “information explaining how and why
the treatment works against the disease”) were deemed to have no
parallel items in decision-making, because there is no choice or
decision to be made at the patient-physician interaction point (e.g.,
how a treatment works against a disease is determined by prior
medical research and not up to either the patient or the physician
to decide). These information items were removed. Two new
items were added: one item was broken down to two (when and
where to get Complementary/Alternative Medicine or CAM); one
item about CAM practitioner was added to the Health Care
Provider subscale. This stage resulted in a total of 34 items.
3.3 Stage 3: Content validity testing
Content validity of the subscales and the items of the 34-item
instrument was assessed by six graduate students, who were given
definitions of the subscales/domains (Table 2) and instructed to
independently sort each item into one of the eight subscales.
Definition
Part 2: Decision-making Preference Questionnaire
Decisions regarding if, what, when, and how a
conventional method (e.g., medicine, surgery) should be
used to control a health control
Decision regarding the name, stage, and potential impact of
a health condition
Decision regarding if, what, when, and how a laboratory
test or medical exam should be used to diagnose or monitor
a health condition, and how to interpret the results of a
given laboratory test
Decision regarding a) if, what, when, and how I should
take a physical or dietary action to maintain health, prevent
disease, or control a health condition, b) how to adjust to
potential impact of the health condition on my work and
daily life, and c) when I should seek professional care
Decision regarding if, when, and where to use
complementary/alternative medicine
medicine (CAM)
Psychosocial Information about how to obtain assistance in
dealing with feelings and family and social concerns
resulted from a health condition
Health care Information about the credentials, experiences, and
provider reputations of medical professionals and facilities,
including the types and quality of services they
provide
Health Information about health insurance or government
insurance/policy policies that may be relevant to a specific health
condition
Average congruency percentage of item assignment to subscale
was 80.4% for the Information items (range: 76.5%-85.3%) and
74.5% for the Decision-making items (range: 55.9%-82.4%).
Based on the results of the content validity testing, the following
major changes were made to the instrument:
• Item re-categorization: Items being “misplaced” by the
majority of these graduate students were carefully examined
and re-categorized. For instance, the item of “Information
about the credentials of CAM practitioners (e.g.,
chiropractors, acupuncturists)” and its decision-making
parallel item “Decision regarding whether to see a particular
CAM practitioner” were initially placed in the “Health care
provider” subscale. However, none of the graduate students
sorted this decision-making item into the Health care
provider subscale, and only half of them sorted the
information item into this subscale. Thus, these items were
re-categorized into the “CAM” category.
• Subscale re-ordering: The “Health condition-specific”
subscale was renamed “Diagnosis” and moved up to be the
first subscale, followed by the second subscale of Treatment.
This re-ordering reflects better the typical medical encounter
process: i.e., from diagnosis to treatment (the initial ordering
of the subscales was based on the extent to which each
domain has been studied in the existing literature;
“Treatment” was initially listed as the first subscale because
it is the most extensively studied domain in the literature).
• Item adding: Some items were rephrased and broken down
into multiple items to increase clarity: e.g., “Information
about the likelihood of children or other family members also
being affected by this health condition” was rephrased and
broken down to two items: “Information about whether this
health condition is contagious” and “Information about
whether this health condition is genetic.” Corresponding
changes were made to the parallel decision-making item.
• Item rephrasing: Items being correctly sorted by the majority,
but not all, of the graduate students were still carefully
examined and rephrased to further increase clarity. For
instance, one of the Self-care items, “Information about how
to care for a wound or incision at home after a surgery,” was
sorted by two participants into the “Treatment” subscale
because of the word “surgery”; thus, the words “after a
surgery” in this item were removed to avoid such confusion.
• Subscale submerging: The subscale of “Health insurance/
policy” was submerged into other subscales. While the two
initial items in this subscale were correctly sorted by all
participants, verbal feedback from some participants suggests
276
Decision regarding if, what, when, and how to obtain
assistance in dealing with feelings and family and social
concerns resulted from a health condition
Decision regarding which medical professional and facility
should provide the care
Decision regarding which insurance plan to use, if and
when to file claims to government agencies
that these items may be highly relevant to four of the other
domains: treatment, laboratory test, CAM, and psychosocial
(e.g., what treatment to use is often determined by whether a
particular treatment is covered by the patient’s health
insurance plan). Thus, we decided to remove this subscale
but expanded insurance-related items and placing one
insurance-related item into each of the four relevant domains
(i.e., “Information about whether a particular treatment/
laboratory test/CAM/counseling program is covered by my
current health insurance plan”). The parallel decision-making
items were revised accordingly (i.e., “Decision regarding
whether to use a particular treatment/laboratory test/CAM/
counseling program if it is not covered by my current health
insurance plan”).
These changes resulted in a 41-item HIWQ, which then went
through the cognitive testing procedure.
3.4 Stage 4: Cognitive testing
Cognitive testing was conducted in January 2010 with 2 younger
adults (undergraduates majoring in Public Health) and 2 older
adults to assess how participants perceive and interpret
questionnaire items and to determine any problematic items.
Cognitive testing or cognitive interviewing was developed from
the fields of cognitive psychology and survey methodology. It
entails researchers asking participants to think aloud as they read a
questionnaire and tell the researchers what they are thinking. This
gives the point-of-view of the participant. It has been used in
health and psychology to validate questionnaires [35, 36].
The cognitive testing resulted in several major changes:
• Initially, the HIW Questionnaire started with two questions:
“Please think about a specific health condition you had in the
past or currently have, and write down the name of this
health condition here” and “How severe do you think this
health condition is?” The intent was to use the answers to
these questions as control variables in the data analysis: as
suggested in the literature, the type of a health condition
(e.g., acute or chronic, which we had planned to use to code
the health condition a participant might write down) and
perceived severity can affect how much information one
wants and how much s/he wants to participate in decision-
making [e.g., 8]. Based on the cognitive testing results,
several questions were added to gather data for additional
control variables: “Is this a condition you had in the past or
currently have?” “How long have you had this condition?”
and “How knowledgeable do you think you are about this
condition?” Also, the question of “How much information
would you like to have about this condition?” was added to
serves as a global item for assessing preferences for
information in general. In parallel with this change, a global
 item was added to assess general decision-making
preferences: “Who do you think should make the decision
related to this specific health condition?”
• Personality is added as a control variable; this is in line with
prior studies showing personality being a predicative variable
for information and decision-making preferences [9, 37].
• The word “conventional” in items such as “Information
about the benefits and risks of different conventional
treatments” caused some confusion (some thought it meant
“traditional” treatments such as herbal treatments). This word
is now changed to “standard.”
The result is the 40-item HIW Questionnaire. It includes two main
scales: the Information Preference Scale, and Decision-making
Preference Scale. Each scale contains seven sub-scales with
parallel items in the information and decision-making areas (Table
3).

Table 3. Items of the 40-item HIW Questionnaire

Subscale Part 1: Information Preference Items Part 2: Decision-making Preference Items
Diagnosis (6 items) 1. Information about what areas should be covered in 1. Decision regarding what areas to cover in the
the medical appointment to help to diagnose this medical appointment to help to diagnose this
health condition health condition
2. Information about the stage of this health condition 2. Decision regarding what stage of this
(e.g., how advanced it is, how far it has spread) condition it is (e.g., how advanced it is, how
far it has spread)
3. Information about how severe this health condition 3. Decision regarding how severe this health
is condition is
4. Information explaining why further referral is 4. Decision regarding whether further referral is
necessary necessary
5. Information about whether this health condition is 5. Decision regarding whether this health
contagious condition is contagious
6. Information about whether this health condition is 6. Decision regarding whether this health
genetic condition is genetic
Treatment (standard) 7. Information about the benefits and risks of different 7. Decision regarding what standard treatment(s)
(9 items) standard treatments to use
8. Information about the treatment procedures 8. Decision regarding how to proceed with a
given treatment
9. Information explaining how a medication may help 9. Decision regarding whether to use a
to treat this health condition medication
10. Information about the specific drug(s) prescribed 10. Decision regarding which specific drug(s) to
use
11. Information about the dosage of medication 11. Decision regarding what dosage to use
12. Information about changing medications 12. Decision regarding whether to change
medications
13. Information about surgery procedures 13. Decision regarding whether to proceed with a
given surgery
14. Information about the advantages and 14. Decision regarding whether to be treated in a
disadvantages of being treated in a hospital versus hospital or on an outpatient basis
on an out-patient basis
15. Information about whether a particular treatment is 15. Decision regarding whether to use a particular
covered by my current health insurance plan treatment if it is not covered by my current
health insurance plan
Laboratory test (4 16. Information about the benefits and risks of different 16. Decision regarding what laboratory test(s) to
items) laboratory tests use
17. Information about the procedures of laboratory tests 17. Decision regarding how to proceed with a
given laboratory test
18. Information about interpretations of the results of 18. Decision regarding how to interpret the results
laboratory tests of a given laboratory test

277
 19. Information about whether a particular laboratory
test is covered by my current health insurance plan
Self-care (5 items) 20. Information about different types of physical
exercise or dietary change that may help to control
this health condition or maintain health
21. Information about how this health condition may
affect my work
22. Information about how this health condition may
affect my personal life (e.g., sexual activity,
smoking, alcohol use, hobbies)
23. Information about how to care for a wound or
incision at home
24. Information about the benefits, risks, and
procedures of physical exams that I may need to
perform in my daily life (e.g., breast self
examination)
Complementary/ 25. Information about the benefits and risks of
alternative medicine complementary/alternative medicine (e.g.,
(6 items) chiropractic, acupuncture)
26. Information about the benefits and risks of using
complementary/alternative medicine alone versus
in combination with conventional medicine
27. Information about when to get
complementary/alternative medicine
28. Information about where to get
complementary/alternative medicine
29. Information about the credentials, experiences, or
reputations of complementary/alternative medicine
practitioners (e.g., chiropractors, acupuncturists)
30. Information about whether a particular
complementary/alternative medicine is covered by
my current health insurance plan
Psychosocial (8 items) 31. Information about how to deal with my feelings
about this health condition
32. Information about support groups where I can talk
with other people in similar situations
33. Information about how this health condition may
affect feelings about myself
34. Information about how the treatment may affect
feelings about myself
35. Information about how this health condition may
affect feelings about my social life
36. Information about how the treatment may affect
feelings about my social life
37. Information about how to involve my family in
278
19. Decision regarding whether to use a particular
laboratory test if it is not covered by my
current health insurance plan
20. Decision regarding what physical exercise or
dietary change to undergo in order to control
for this health condition or maintain health
21. Decision regarding how to adapt to this health
condition at work
22. Decision regarding how to adapt to this health
condition in my personal life
23. Decision regarding how to care for a wound
or incision at home
24. Decision regarding what physical exams
needed to perform in my daily life (e.g.,
breast self examination)
25. Decision regarding whether to use
complementary/alternative medicine (e.g.,
chiropractic, acupuncture)
26. Decision regarding whether to use
complementary/alternative medicine alone or
in combination with standard medicine
27. Decision regarding when to get
complementary/alternative medicine
28. Decision regarding where to get
complementary/alternative medicine
29. Decision regarding whether to see a particular
complementary/alternative medicine
practitioner (e.g., chiropractors,
acupuncturists)
30. Decision regarding whether to use a particular
complementary/alternative medicine if it is
not covered by my current health insurance
plan
31. Decision regarding how to deal with my
feelings about this health condition
32. Decision regarding whether to join support
groups to talk with other people in similar
situations
33. Decision regarding how to deal with feelings
about myself as a result of this health
condition
34. Decision regarding how to deal with feelings
about myself as a result of the treatment
35. Decision regarding how to deal with feelings
about my social life as a result of this health
condition
36. Decision regarding how to deal with feelings
about my social life as a result of the
treatment
37. Decision regarding how to involve my family
 dealing with feelings about this health condition
38. Information about whether a particular counseling
program is covered by my current health insurance
plan
Health care provider 39. Information about the credentials, experiences, or
(2 items) reputations of a particular medical facility
40. Information about the credentials, experiences, or
reputations of a particular medical specialist
In the Information Preference Scale, participants were asked to
indicate their preferences for each type of health information on a
five-point Likert scale, in which response choices range from 1
(None) to 5 (All). In the Decision-making Preference Scale,
participants were also asked to indicate their preferences for each
type of health decision-making on a five-point Likert scale.
Adapted from Ende et al. [8], response choices are: the doctor
alone, mostly the doctor, the doctor and myself equally, mostly
myself, and myself alone. The testing material also included a
brief demographic questionnaire, items on computer and Internet
use, one global item in each scale, and items that measure the
control variables including perception of severity of health
condition and knowledge about the condition, and personality.
Because personality is not a primary topic of interest in this study,
we used a brief measure of the Big-Five dimensions: the 10-item
Personality Inventory [38].
3.5 Stage 5: Pilot testing
In February-March 2010, the 40-item HIW Questionnaire was
pilot tested with 43 individuals to generate preliminary data about
the psychometric properties of the instrument. The results show
that this instrument has strong reliability and validity. We used
Cronbach’s Alpha ( α ) coefficients [39], a measure of internal
consistency, as an estimate of reliability. The Cronbach’s alphas
were .98 and .96 for information and decision-making,
respectively, which indicates that the items within each dimension
were internally consistent and reliable. The Cronbach’s alphas for
the subscales within the information preference dimension ranged
from .89 to .98 with a mean of .95. The Cronbach’s alphas for the
subscales within the decision-making preference dimension
ranged from .75 to .96 with a mean of .89. Therefore, all the
subscales were reliable.
The scale score of information preference was positively
correlated with the global item measuring preference for
information (r = .45, p < .01). The scale score of decision-making
preference was also positively correlated with the global item
measuring preference for decision-making (r = .28, p < .05).
These significant correlations support the convergent validity of
the Information and Decision-making scales.
4. DISCUSSION
Preferences for health information and participation in decision-
making have been identified as the two dimensions of patient
autonomy [8]. Prior research suggests that these two dimensions
are not correlated: while individuals are universally and
overwhelmingly interesting in having the information, they may
not necessarily be interested in participating in decision-making
[6]. However, one possible reason for this discrepancy is that
information and decision-making preferences are measured
279
in dealing with feelings about this health
condition
38. Decision regarding whether to use a particular
counseling program if it is not covered by my
current health insurance plan
39. Decision regarding whether to go to a
particular medical facility
40. Decision regarding whether to see a particular
medical specialist
differently in prior studies. While measurements for decision-
making typically focus (predominantly if not exclusively) on
treatment decision-making, measurements for information usually
focus on a much broader range of the type of information – and
even more so in Internet studies. The HIW framework [7], by
identifying a broader range of the types of decision-making that
each corresponds with one type of information, sheds new light on
the widely reported discrepancy between preferences for
information and decision-making. Building onto the HIW
framework, the HIW Questionnaire was developed to empirically
examine the relationships between these types of preferences in
information and decision-making. Unlike prior instruments, the
HIW Questionnaire features parallel constructs and items in a
broad range of information and decision-making preferences. Our
pilot study provides preliminary evidence for the strong reliability
and validity of the instrument.
Moving forward, we are currently testing the HIW Questionnaire
with a larger sample and expect to report the findings in 2011. As
a useful tool for understanding health consumers’ preferences, the
HIW Questionnaire has the potential to help improve patient-
provider relationships and the quality of health care.
5. REFERENCES
[1] Ballard-Reisch, D.S., A model of participative decision
making for physician-patient interaction. Health
Communication, 1990. 2: p. 91-104.
[2] McNutt, R.A., Shared medical decision making: problems,
process, progress. Journal of the American Medical
Association, 2004. 292: p. 2516-8.
[3] Charles, C., A. Gafni, and T. Whelan, Shared decision-
making in the medical encounter: What does it mean? (Or it
takes at least two to tango). Social Science & Medicine,
1997. 44(5): p. 681-692.
[4] Charles, C., A. Gafni, and T. Whelan, Decision-making in
the physician-patient encounter: Revisiting the shared
treatment decision-making model. Social Science &
Medicine, 1999. 49: p. 651-661.
[5] Benbassat, J., D. Pilpel, and M. Tidhar, Patients'
preferences for participation in clinical decision making: a
review of published surveys. Behavioral Medicine, 1998.
24: p. 81-88.
[6] Bagley-Burnett, C., Measuring information-seeking
behaviors and decision-making preferences, in Instruments
for Clinical Health-Care Research, M. Frank-Stromborg
and S.J. Olsen, Editors. 2004, Jones and Bartlett Publishers:
Sudbury, Massachusetts. p. 455-471.
[7] Xie, B., Older adults' health information wants in the
Internet age: Implications for patient-provider
relationships. Journal of Health Communication, 2009.
14(6): p. 510-524.
 [8] Ende, J., et al., Measuring patients' desire for autonomy:
decision making and information-seeking preferences
among medical patients. Journal of General Internal
Medicine, 1989. 4(1): p. 23-30.
[9] Braman, A.C. and R.G. Gomez, Patient personality predicts
preference for relationships with doctors. Personality and
Individual Differences, 2004. 37: p. 815-826.
[10] Krantz, D.S., A. Baum, and M.v. Wideman, Assessment of
preferences for self-treatment and information in health
care. Journal of Personality and Social Psychology, 1980.
39(5): p. 977-990.
[11] Cassileth, B.R., et al., Information and participation
preferences among cancer patients. Annals of Internal
Medicine, 1980. 92: p. 832-836.
[12] Galloway, S.C. and J.E. Graydon, Uncertainty, symptom
distress, and information needs after surgery for cancer of
the colon. Cancer Nursing, 1996. 19: p. 112-7.
[13] Galloway, S.C., et al., Informational needs of women with
a recent diagnosis of breast cancer: Development and
initial testing of a tool. Journal of Advanced Nursing, 1997.
25: p. 1175-1183.
[14] Chalmers, K.I., et al., Information and support needs of
women with primary relatives with breast cancer:
Development of the information and support needs
questionnaire (ISNQ). Journal of Advanced Nursing, 2001.
35(4): p. 497-507.
[15] Beisecker, A.E. and T.D. Beisecker, Patient information-
seeking behaviors when communicating with doctors.
Medical Care, 1990. 28(1): p. 19-28.
[16] Luker, K.A., et al., The information needs of women newly
diagnosed with breast cancer. Journal of Advanced
Nursing, 1995. 22: p. 134-141.
[17] Ankem, K. (2005) Types of information needs among
cancer patients: A systematic review. Libres: Library and
Information Science Research Electronic Journal Volume,
retrieved on January 29, 2009 from
http://libres.curtin.edu.au/libres15n2/.
[18] Rutten, L.J.F., et al., Information needs and sources of
information amount cancer patients: A systematic review of
research (1980-2005). Patient Education & Counseling,
2005. 57: p. 250-261.
[19] Degner, L.F. and J.A. Sloan, Decision making during
serious illness: What role do patients really want to play?
Journal of Clinical Epidemiology, 1992. 45: p. 941-950.
[20] Lazarus, R. and S. Folkman, Stress, Appraisal, and Coping.
1984, New York: Springer.
[21] Johnson, J.E., et al., Sensory information, instruction in a
coping strategy, and recovery from surgery. Research in
Nursing and Health, 1978. 1: p. 4-17.
[22] Dodd, M.J. and N. Ahmed, Preference for type of
information in cancer patients receiving radiation therapy.
Cancer Nursing, 1987. 10: p. 244-251.
[23] Miller, S.M., Monitoring and blunting: Validation of a
questionnaire to assess styles of information seeking under
threat. Journal of Personality and Social Psychology, 1987.
52(2): p. 345-353.
[24] Schwartz, M.D., C. Lerman, and S.M. Miller, Coping
disposition, perceived risk, and psychological distress
among women at increased risk for ovarian cancer. Health
Psychology, 1995. 14(3): p. 232-235.
280
View publication stats
[25] Fox, S. and L. Raine, Vital decisions: how Internet users
decide what information to trust when they or their loved
ones are sick. Plus a guide from the Medical Library
Association about smart healthsearch strategies and good
Web sites. 2002, Pew Internet & American Life Project.
Retrieved on August 20, 2009, from
http://www.pewinternet.org/~/media//Files/Reports/2002/PI
P_Vital_Decisions_May2002.pdf.pdf.: Washington DC.
[26] Ziebland, S., et al., How the internet affects patients’
experience of cancer: a qualitative study. BMJ, 2004. 328:
p. 564.
[27] Strauss, A.L. and J. Corbin, Basics of Qualitative Research:
Techniques and Procedures for Developing Grounded
Theory. 2nd ed. 1998, Thousand Oaks, CA: Sage.
[28] Baker, L., et al., Use of the Internet and e-mail for health
care information: results from a national survey. Journal of
the American Medical Association, 2003. 289: p. 2400-6.
[29] Fox, S., Online Health Search. 2006, PEW Internet &
American Life. Retrieved August 18, 2009, from
http://www.pewinternet.org/~/media//Files/Reports/2006/PI
P_Online_Health_2006.pdf.pdf: Washington DC.
[30] Fox, S., Health Information Online. 2005, Pew Internet and
American Life Project (available at:
http://www.pewinternet.org/pdfs/PIP_Healthtopics_May05.
pdf): Washington, DC.
[31] Fox, S. and L. Raine, The online health care revolution:
how the Web helps Americans take better care of
themselves. 2000, Pew Internet and American Life Project.
Retrieved on August 20, 2009, from
http://www.pewinternet.org/~/media//Files/Reports/2000/PI
P_Health_Report.pdf.pdf: Washington DC.
[32] Dickerson, S., et al., Patient Internet use for health
information at three urban primary care clinics. Journal of
the American Medical Informatics Association, 2004. 11: p.
499-504.
[33] Rozmovits, L. and S. Ziebland, What do patients with
prostate or breast cancer want from an Internet site? A
qualitative study of information needs. Patient Education &
Counseling, 2004. 53: p. 57-64.
[34] Fox, S., E-patients with a disability or chronic disease.
2007, PEW Internet & American Life. Retrieved on August
20, 2009, from
http://www.pewinternet.org/~/media//Files/Reports/2007/E
Patients_Chronic_Conditions_2007.pdf.pdf.: Washington
DC.
[35] Drennan, J., Cognitive interviewing: Verbal data in the
design and pretesting of questionnaires. Journal of
Advanced Nursing, 2003. 42(1): p. 57-63.
[36] Willis, G.B., Cognitive interviewing and questionnaire
design: A training manual. 1994, National Center for
Health Statistics: Washington DC.
[37] Flynn, K.E. and M.A. Smith, Personality and health care
decision-making style. Journal of Gerontology:
PSYCHOLOGICAL SCIENCES, 2007. 62B(5): p. P261-
P267.
[38] Gosling, S.D., P.J. Rentfrow, and W.B. Swann Jr., A very
brief measure of the Big-Five personality domains. Journal
of Research in Personality, 2003. 37: p. 504-528.
[39] Cronbach, L.J., Coefficient alpha and the internal structure
of tests. Psychometrika, 1951. 16: p. 297-334.