Professional Documents
Culture Documents
research-article2015
Article
Martina A Clarke
Joi L Moore
Linsey M Steege
Abstract
To synthesize findings from previous studies assessing information needs of primary care patients on
the Internet and other information sources in a primary care setting. A systematic review of studies was
conducted with a comprehensive search in multiple databases including OVID MEDLINE, CINAHL, and
Scopus. The most common information needs among patients were information about an illness or medical
condition and treatment methods, while the most common information sources were the Internet and
patients physicians. Overall, patients tend to prefer the Internet for the ease of access to information, while
they trust their physicians more for their clinical expertise and experience. Barriers to information access
via the Internet include the following: socio-demographic variables such as age, ethnicity, income, education,
and occupation; information search skills; and reliability of health information.
Corresponding author:
Min Soon Kim, Department of Health Management and Informatics, University of Missouri, CE728 Clinical Support &
Education, DC006.00, 5 Hospital Drive, Columbia, MO 65212, USA.
Email: kimms@health.missouri.edu
Conclusion: Further research is warranted to assess how to create accurate and reliable health information
sources for both Internet and non-Internet users.
Keywords
information need, information-seeking behavior, patient-centered care, patients, primary healthcare
Introduction
Information needs and information sources of patients
The Institute of Medicine (IOM) recognizes patient-centered care (PCC) as one of six major
domains of healthcare quality. The Agency for Healthcare Research and Quality (AHRQ) defines
PCC as the relationship-based primary care that meets the individual patient and familys needs,
preferences, and priorities.2 PCC integrates the disease and illness experience while acknowledging
the whole person to create a sharing of power, responsibility, and therapeutic alliance.3 Better understanding of patient information needs is important for providing patients with updated and relevant
information to assist in making informed decisions concerning their healthcare and allows patients
to be involved in assessing healthcare options available to them. In this review, information needs
of patients is defined as patients desire for more information on a particular subject matter that is
expressed verbally or in active information-seeking to assist in taking better care of themselves.4,5
The frequency of patients seeking information has increased due to widespread access to health
information mass media and the Internet.6 With the increased access to the Internet, large amounts
of health information are now readily available for consumers. In 2013, 73percent of American
households had Internet access.7 The limited access to information from traditional channels, such
as physicians and books, and the ready availability of trusted online sources, may be driving the
demand for online health information.8 For example, by 2010, the use of print media fell sharply
from 33percent to 18percent, which may account for most of the decline in overall patient information-seeking.9 This downward trend in the use of print media for health information may be
explained by the declining circulation of print newspapers, magazines, and sales of hardcopy
books.10 Currently, health information is the third most popular online activity measured in the latest Pew Internet study, which is a nationwide survey of 3014 adults living in the United States.
Fifty-nine percent of the US adults search online and 52percent of smartphone owners use their
phone to find health information.11 Identifying patients current information needs and information
sources will assist with presenting information in a manner that suits the health information needs
Clarke et al.
of the patients. Harris and Dewdneys principles of information-seeking are employed as an analytic framework and structure for categorizing and examining information sources patients use to
satisfy their information needs.12,13
Information-seeking models
Information-seeking models have evolved from researchers in the library and information science
disciplines. Marchionini and White describe the process of information-seeking as a set of activities that people undertake in a progressive and diversely iterative manner. The information seeker
(1) recognizes the need for information; (2) accepts the challenge to take action to fulfill the need;
(3) formulates the problem; (3) uses a search system to express the information need; (4) examines
the results from the search, if not satisfied; (5) reformulates the problem and its expression, if satisfied, decides to stop the search; and (6) uses the information found.14
Kuhlthau describes the information search process (ISP) as a six-stage model of the users experience during the information-seeking process: task initiation, selection, exploration, focus formulation, collection, and presentation. The ISP model pinpoints three dimensions of experience that
are prevalent to each stage: the cognitive (thoughts), the affective (feelings), and the physical
(actions).15 As the search process evolves, users thoughts that begin as ambiguous become clearer.
Research has shown that users experience anxiety and doubt in the beginning of the search process
but become more confident and certain as the search progresses. Users take action in the beginning
of the search process by seeking general information and focus on more relevant information
toward the end of their search.16,17
Sense-making is producing situational awareness and understanding in highly complicated and
uncertain circumstances in order to make a decision.18 Dervin etal. describe information-seeking
as a situation-sensitive sense-making process. The sense-making model focuses on the cognitive
gap that hinders a users momentum when trying to make sense of information he or she observes.
The user needs to conquer that gap by getting help or making sense of the situation in order to
achieve their desired outcome.18,19
Harris and Dewdney combined past research of DePaulos20 steps in help-seeking, Krikelas21
model of information-seeking, and Dervin etal.s sense-making model to create six general principles of information-seeking behavior. Harris and Dewdney made these principles generalizable in
order to apply to ordinary people, such as primary care patients. The principles are as follows: (1)
information needs arise from the help-seekers situation; (2) the decision to seek help or not seek
help is affected by many factors; (3) people tend to seek information that is most accessible; (4)
people tend to first seek help or information from interpersonal sources, especially from people
like themselves; (5) information seekers expect emotional support; and (6) people follow habitual
patterns in seeking information.12,13
Information overload
There are many sources of information available today for patients to find answers to their healthrelated questions, which may cause information overload. Bawden etal.22 suggest that information
overload can occur when information received becomes more of an impediment rather than benefit. Information overload may cause the following: incorrectly processing information, delay in
processing information, accepting lower quality information, and giving up the search for needed
information.23 In order to present patients with information effectively, it is necessary to assess
their information requirements as the clinical environment moves toward a patient-centered model
and health information becomes more attainable through multiple sources.
Method
Search strategy and study selection
This review selectively adopted the Preferred Reporting Items for Systematic reviews and MetaAnalyses (PRISMA) guidelines to format the contents of the review. PRISMA is a validated
method to conduct literature reviews which ensures the transparent and complete reporting of
systematic reviews.28 PRISMA includes a checklist of items to include when reporting a systematic
review and a flow diagram of showing the different phases of a systematic review. Both the checklist and flow diagram were used as references to guide the structure of this article. The checklist
has 27 items, which include the title, abstract, methods, results, discussion, and funding, that should
be included in the content of a systematic review. Figure 1 illustrates the flow of information
through the different phases of a systematic review.28
Data sources
To identify pertinent studies, a literature search was conducted with assistance from two professional health librarians for the combined concepts indicated below. There were searches in OVID
MEDLINE, OVID MEDLINE In-Process, Cochrane Controlled Trials Register (limited to Embase
Records), Cochrane Database of Systematic Reviews, PsycINFO, CINAHL, Scopus,
Communication and Mass Media, Library Literature and Information Science Full Text, ERIC, and
Library Information Science and Technology Abstracts. We began searching databases for articles
on 27 August 2011 and we continued searching until the submission of this article. A total of 607
citations were initially retrieved from these databases.
Inclusion criteria
Retrieval was limited to original articles in primary care of adult patients in outpatient setting, written in English, and which were published from 2000 to 2015. Medical Subject Heading (MeSH)
Clarke et al.
Figure 1. Flow chart of the review of literature to finalize selected articles to include in this review. After
examination of full articles, 46 articles were chosen to be a part of the review.
terms used were as follows: patient education as a topic, health education, information-seeking
behavior, primary healthcare, and family practice. Search terms used that were not included in
MeSH were as follows: information needs and information source and over 50 other terms. A
detailed search strategy, including all the terms used, is found in Supplementary Appendix 1.
Exclusion criteria
Studies excluded from this review were opinion pieces, editorials, articles using secondary data,
review papers, articles on patients seen by specialist physicians, and inpatient hospital setting.
Figure 1 shows a flow chart of the review of literature to finalize selected articles to include in this
review. The examination of article abstracts revealed 141 articles for full article review. After examination of articles, 98 were excluded because they were not directly related to information needs or
information-seeking behavior of patients, were concerning pediatric patients, or were from studies
not in a primary care setting. Forty-six relevant articles then became a part of the review.
Data extraction
Titles and abstracts were initially reviewed to select articles for full-text analysis by three authors
(M.A.C., M.S.K., and J.L.B.). A literature search was conducted with assistance from two professional health librarians and relevant articles were located by one author (M.A.C.). When the
author was unsure whether the article met inclusion criteria, two authors (M.S.K. and J.L.B.) were
contacted to assess the articles relevance. One author, a family medicine physician (J.L.B.),
assisted in identifying articles that were related to primary care and identifying those that were
not. Articles were examined for instances of codes for information needs and information
resources. Information needs and sources were coded only if the article specifically mentioned
them in their results. Data extracted from the articles were as follows: author name, year of publication, title of article, disease (if mentioned), research method used to collect data, country study
took place, sample population, aim of the study, main findings of the study, information needs and
sources mentioned, and barriers to information access.
Results
Characteristics of reviewed studies
Table 1 summarizes the studies selected for evaluation on information needs and informationseeking behavior of patients sorted alphabetically. The table contains the authors, research method,
location of study, sample population, aim of the studies, and important findings. The studies were
conducted in multiple countries including the United States,31,33,37,38,41,42,48,51,57,65,67,69,70,72,74 United
Kingdom,29,30,34,43,46,49,52,53,55,5860,71,73,75 Canada,40 Australia,35,44,54 The Netherlands,56,62,63,68
Croatia,36 Denmark,32 Greece,47,66 Japan,61 and Scotland.39 Common research methods included interviews,29,30,3235,40,49,54,5860,7173,75 focus groups,48,50,51,67 questionnaires,31,36,39,44,46,52,53,55,60,62,63,66,67 and
computer logs.65,70,74
England
United States
Denmark
United States
Questionnaire
(n=189)
Interview
conducted
in Denmark
(n=93)
Interviews
conducted in
the United
States (n=17)
Baldwin etal.31
Caiata-Zufferey
etal.33
England
Interviews
conducted in
England (n=10)
Interviews
conducted in
England (n=16)
Attfield etal.29
Place
Avery and
Braunack-Mayer30
Research
method
Study
Sample population
Aim
(Continued)
Findings
Table 1. Summary of studies selected for evaluation on the information needs and information-seeking behavior of patients sorted alphabetically.
Clarke et al.
7
Australia
Croatia
United States
United States
Questionnaire
conducted
in Croatia
(n=949)
Survey
conducted in
the United
States (n=512)
Survey
conducted in
the United
States (n=315)
Delic etal.36
Diaz etal.37
Dickerson etal.38
England
Interview
conducted
in Australia
(n=17)
Interview
(n=32)
Caress etal.34
Place
Dahm35
Research
method
Study
Table I. (Continued)
Sample population
Aim
Findings
8
Health Informatics Journal
Canada
United States
United States
England
Focus groups
and interviews
conducted
in Canada
(n=appx. 61)
Focus groups
(n=3 focus
groups of 56
individuals)
Survey
conducted in
the United
States (n=150)
Focus groups
conducted in
England (n=38)
Evans etal.40
Fiksdal etal.41
Gaglio etal.42
Goldsmith etal.43
Scotland
Questionnaire
conducted
in Scotland
(n=4407)
Duffy etal.39
Place
Research
method
Study
Table I. (Continued)
Sample population
Aim
(Continued)
Findings
Clarke et al.
9
England
Greece
United States
Focus
groups and
questionnaires
conducted
in England
(n=363)
Questionnaire
(n=203)
Focus groups
conducted in
the United
States (n=39)
Hyland etal.46
Kalantzi etal.47
Karras and
Rintamaki48
Hong etal.45
United States
Australia
Survey,
questionnaire
conducted
in Australia
(n=800)
Survey
conducted in
the United
States (n=116)
Hogue etal.44
Place
Research
method
Study
Table I. (Continued)
Sample population
Aim
Findings
10
Health Informatics Journal
United
Kingdom
United States
United States
England
Focus group
conducted in
the United
States (n=37)
Focus groups
conducted in
the United
States (n=46)
Questionnaires
conducted
in England
(n=502)
Loeb etal.50
Longo etal.51
Place
Interview
conducted in
the United
Kingdom
(n=31)
Research
method
Kivits49
Study
Table I. (Continued)
Sample population
Aim
(Continued)
Findings
Clarke et al.
11
The
Netherlands
Murray etal.57
Survey
conducted in
the United
States
(n=3209)
United
Kingdom
Questionnaire
conducted in
the United
Kingdom
(n=660)
Survey (n=118)
Mead etal.55
Medlock etal.56
Australia
Interviews
conducted
in Australia
(n=19)
United States
McCaffery and
Irwig54
United
Kingdom
Questionnaire,
focus groups
conducted
in London
(n=224)
Sample population
Malone etal.53
Place
Research
method
Study
Table I. (Continued)
Aim
The effect of the Internet on health informationseeking behavior has been imposed on patterns of
health information-seeking such as social, cultural,
and economic divisions
Findings
12
Health Informatics Journal
Observation,
interview
conducted in
the United
Kingdom
(n=45)
Interviews
conducted in
England (n=38)
Papen58
England
Japan
Survey
conducted in
Japan (n=1189)
Sakai etal.61
England
Interviews,
systematic
reviews,
questionnaires
conducted in
England
Sample population
United
Kingdom
Place
Redfern etal.60
Prinjha etal.59
Research
method
Study
Table I. (Continued)
Aim
(Continued)
Findings
Clarke et al.
13
Questionnaires
conducted
in The
Netherlands
(n=233)
Questionnaires
conducted
in The
Netherlands
(n=191)
Survey
conducted in
the United
States
(n=1289)
Sawicki etal.62
Greece
United States
Questionnaire
conducted
in Greece
(n=743)
Focus
groups and
questionnaires
conducted in
the United
States (n=53)
Stavropoulou66
Taha etal.67
United States
United States
The
Netherlands
Computer logs
conducted in
the United
States
(n=1587)
Sample population
The
Netherlands
Place
Shuyler and
Knight65
Schwartz etal.64
Schinkel etal.63
Research
method
Study
Table I. (Continued)
Aim
Findings
14
Health Informatics Journal
Zach etal.73
Xie72
Interview
conducted in
the United
States (n=20)
Interview
conducted in
England (n=53)
United States
Survey
conducted in
the United
States (n=515)
Interview
(n=47)
White and
colleagues18,69
England
United States
United
Kingdom
United States
Computer logs
conducted in
the United
States
White etal.70
Wilkinson etal.71
United States
The
Netherlands
Computer logs
conducted in
the United
States
Feedback
instrument
(n=98)
Thoonen etal.68
Place
White and
Horvitz69
Research
method
Study
Table I. (Continued)
Sample population
Aim
Findings
Clarke et al.
15
16
Table 2. List of information needs of patients commonly mentioned in pertinent articles from the review
of literature (percentages of articles overlap).
Information need
No. of articles
% of articles
17
12
9
8
8
7
7
7
7
5
5
4
4
2
65
46
35
31
31
27
27
27
27
19
19
15
15
8
Table 3. List of information sources utilized by patients commonly mentioned in pertinent articles from
the review of literature (percentages of articles overlap).
Information source
No. of articles
% of articles
Internet
Physician
Television
Family and friends
Magazine
Pharmacist
Radio
Newspapers
Leaflet
Popular books
Nurses
Email or support groups
Medical books
Other healthcare professional
Public library
Organization
Medical journals
Newsletters
Specialist, others with disease, seminar/course/lecture
Dietician, Email with a healthcare provider, first aid
training
18
15
14
13
12
10
10
10
9
8
5
5
5
4
4
4
3
3
2
1
86
71
67
62
57
48
48
48
43
38
24
24
24
19
19
19
14
14
10
5
17
Clarke et al.
Discussion
We are using Harris and Dewdneys six principles of information-seeking behavior as an analytical
framework to explain our results.
Harris and Dewdney Principle 1: information needs arise from the help-seekers
situation
In the context of this study, primary care patients visits to their primary care physician are often
driven by the need to receive diagnostic and/or therapeutic information from their physician based
on symptoms the patient may be experiencing. Patients try to satisfy their information needs during
initial contact with healthcare providers,80 and patients prefer having background knowledge about
their condition along with an understanding of the diagnosis. Hence, it was not surprising that information on an illness or medical condition, especially chronic illnesses, was a common information
need. In 2013, 7 of the 10 leading causes of death in the United States were chronic diseases, and
almost 50percent of Americans had at least one chronic illness.81 A report by World Health
Organization (WHO) calls for simple lifestyle changes, such as nutrition and physical activity, to
reduce the prevalence of chronic diseases.82 Both proactive patients, who wish to prevent chronic
diseases, and chronic disease patients looking for natural remedies to complement their current
treatment seek information on nutrition and exercise.57 For some chronic conditions, regular exercise can help manage symptoms and improve health. Regular physical activity reduces the risk of
coronary artery disease, stroke, type 2 diabetes, colon and breast cancer, osteoporotic fractures,
osteoarthritis, depression, and erectile dysfunction.83 The health benefits from physical exercise
may be the driving force that influences patients information need for exercise/physical activity.
It is difficult to completely separate the information sources patients use from their information
needs. For example, patients initiate pre-consultation information-seeking to determine the type of
physician they need to see29,38,56,58,61,64,67,72 and to prepare for a consultation.29,35,41,49,56,72 For this
information, they frequently use the Internet as an information source.41,56,58,61,64,67 This is usually
motivated by a concern not to waste healthcare resources or their own time.29,33,35,41,47,49,84 During
a consultation, patients attempt to validate the information found on other resources with their
physicians knowledge.33,51 After consultation, patients also seek information as a second opinion
to validate the information provided at consultation29,33,56,67 and to research alternative medicines
or new/experimental treatment available to them.29,37,38,59,6164,67 Also, patients may not be satisfied
with the information provided by their physician and feel the need to seek out information on their
own, perhaps to fill in gaps in the information provided.35,49,57,72 For these needs, patients use the
Internet as a source of information.
Harris and Dewdney Principle 2: the decision to seek help or not seek help is
affected by many factors
In the context of this study, many factors affected the decision to seek information or not seek information through the use of Internet for health information. For example, in countries lacking a publicly
funded healthcare system, the uninsured patients use the Internet as an alternative expert for medical
advice due to costs and their limited access to physicians as an information source.48 Younger people
with Internet access are more likely to search the Internet for health information because of the ease
of use and privacy when searching for sensitive health information.47,85 Similarly, health information
seekers with higher educational background or household income were more likely to use the Internet
to look for medical information.37,47,55,57,61 Patients who are independently searching for health
18
information, especially on the Internet, may face challenges due to lack of effective search skills and
issues with reliability of information.34,41,67,86 Usability was a major deterrent for patients when using
electronic health information resources. For example, female patients seeking information on human
papillomavirus and female patients with polycystic ovary syndrome stated that the information found
on the Internet was useful but not easy to acquire.54 Searching skills are required to find quality information. Therefore, the issues with technical search terms that are not used in everyday language and
complicated website design may result in navigation difficulties that may discourage patients.86
Natural language processing may be beneficial in the case of technical search terms to assist patients
in finding information they need. Health information websites could improve ease of use by not
requiring patients to enter complex medical terms when searching and by performing more usability
testing to detect and resolve common navigation and user input errors.
Validity of healthcare information was also a big concern when determining satisfaction with a
health information resource. Identifying quality health information is not always easy because of the
difficulties in distinguishing credible sources from unreliable sources. Although the Internet contains
a large amount of readily available information, it is unregulated and may be inaccurate and contain
bias.8789 Adelhard and Obst90 indicated that more than half of health information websites offer unreliable information. Thus, patients who engage in their healthcare by seeking online health information may receive inaccurate information that can harm their health. The increase in patient or personal
health record technologies (e.g. patient portals) as additional information sources may help in addressing issues of the inaccuracy and bias associated with the Internet as a patient information source.
Harris and Dewdney Principle 3: people tend to seek information that is most
accessible
According to Harris and Dewdney,13 information should be physically, psychologically, and
intellectually accessible. In a number of studies, the Internet was used as a second opinion or as
information supplement after an office visit. A study by Tustin91 found an association between
unmet information needs provided by their physician and patients reliance for health information
from the Internet, which shows there is a need for improved patientprovider communication. This
finding is consistent with the results of other studies that identify the Internet as being used as a
major communication tool when individuals felt a lack of patient-centered communication with
their healthcare providers.91,92 Patients may also use the Internet when new questions arose after the
consultation.33 For example, female patients searched for information on human papillomavirus43
on the Internet after consultation, because they felt inadequately informed, needed a better understanding, and wanted to find more updated information on treatment options.43 Diabetes patients
searched for information on the Internet to increase their knowledge of self-management of their
chronic disease.51 The Internetalso has the potential to influence some patients decisions about
treatment;84,92,93 thus, it is important that patients receive reliable online health information to reduce
the risk of making incorrect clinical decisions based on Internet content. Beyond the more general
publicly accessible Internet sources, patients are more frequently gaining online access to clinicians
visit notes. These patient-specific web-based resources can help to increase patient engagement in
healthcare, specifically, patient portals, which are secure online websites providing patients convenient 24 hour access to personal health information. OpenNotes is a national initiative in the
United States that encourages providers to give patients access to their healthcare providers visit
notes.94 Access to patient portals could provide patients with accurate information from their providers office.95 For example, the US Department of Veterans Affairs invited patients and their delegates to review and download content from their electronic health record through the online portal,
My HealtheVet.96 Although some patients found access to their records overwhelming, the results
19
Clarke et al.
show that patients reviewing their records positively affected patientprovider communication,
improved self-care, and increased patient participation improving quality of care.
Harris and Dewdney Principle 4: people tend to first seek help or information from
interpersonal sources, especially from people like themselves
Our results show that family and friends were an important source of information for patients.31,32,37,42,44,51,53,61,66,67,71 Primary care patients receive various information, such as advice on
diets and weight control, information on medical problems, and medications, especially from people who have the same disease.32,44,51 Studies by Wilkinson etal.71 and Longo etal.51 found that
relatives and friends were frequently cited as sources of information, especially in families with a
history of diabetes. Patients in Stavropoulous66 study regarded family and friends as information
sources on hypertension and medication for hypertension. Malone etal.53 found that patients were
also using interpersonal sources for advice on alternative forms of healthcare. Patients who do not
use the Internet as their main health information sources rely on their family and friends for information than patients who use the Internet. This suggests that Internet users may be less reliant on
these other sources as principal sources of health information.37,67
20
information needs of patients. Out of 46 articles, 21 articles utilized the questionnaire or survey
method to collect data, 14 articles utilized interviews as a method of data collection, 8 articles
utilized focus group as a part of their data collection, and 3 articles employed log analysis as their
data collection method. However, questionnaires, interviews, and focus groups are implemented
after an event, which could be a weakness to these methodologies because of the dependency on
the participants ability to accurately and completely recall information. Also, recall using these
methods may also introduce social desirability bias.99 For example, Hogue etal.44 used openended questions that required people to recall past events and behaviors when investigating media
influence on consumers health-related behaviors and participants may have forgotten important
information that could have been pertinent to the study. A study by Zach etal.,73 Budtz and Witt,32
and Caiata-Zufferey etal.33 used face-to-face anonymous interviews with patients waiting for
appointments. Patients being approached in a waiting room may feel trapped and may not answer
questions truthfully when asked questions during the interview, including a bias toward social
desirability in their answers. Five articles adopted a mixed methods approach to their data collection. Using a mixed methods approach, such as triangulation, can increase the validity of research
findings. For example, to determine older adults health information needs and perceived usefulness of health information sources, Taha etal.67 used both focus groups and a questionnaire to
gather data. Future research should therefore consider a mixed methods methodology to assist in
increasing the comprehensiveness of overall findings by including both quantitative and qualitative methods.100
Conclusion
Health information needs in primary care is an under-investigated area. This study provides a foundation for determining the most common information needs among primary care patients and
understanding how the lack of physician accessibility can awaken these information needs. The
breadth of information in primary care is unique and primary care patients have different information needs than the general population who are not actively patients, so this review contributes to
21
Clarke et al.
the literature by focusing on actual patients. While there is some literature on patient information
needs, this review adds to the discussion of patient information needs by utilizing an informationseeking framework to structure the discussion in order to help to identify types of user-centered
behavior which may affect when and how patients satisfy their information needs. In addition, the
findings from this review point to the importance of Internet-based information sources to supplement or extend the information gleaned from physicianpatient interactions. Improving patient
engagement in healthcare through online access to clinicians visit notes and personal health record
may improve the quality of patient information by reducing their reliance on less reliable sources.
In spite of the increase in available information through patient-centered online health records and
information sources, it is challenging to distribute accurate and useful health information to patients
without Internet access. However, it is essential to meet that challenge and facilitate quality health
information exchange to increase patient awareness and achieve better health outcomes.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
References
1. The physician workforce: projections and research into current issues affecting supply and demand. US
Department of Health and Human Services, Health Resources and Services Administration, Bureau of
Health Professions, Rockville, MD, 2008.
2. Patient-Centered Care. Agency for Healthcare Research and Quality, http://pcmh.ahrq.gov/page/patientcentered-care (accessed 25 July 2014).
3. Hudon C, Fortin M, Haggerty JL, etal. Measuring patients perceptions of patient-centered care: a systematic review of tools for family medicine. Ann Fam Med 2011; 9(2): 155164.
4. US Census Bureau. Statistical abstract of the United States: 2012. United States Census Bureau, 2012,
https://www.census.gov/prod/www/statistical_abstract.html
5. Forsythe DE, Buchanan BG, Osheroff JA, etal. Expanding the concept of medical information: an observational study of physicians information needs. Comput Biomed Res 1992; 25(2): 181200.
6. Eysenbach G and Jadad AR. Evidence-based patient choice and consumer health informatics in the
Internet age. J Med Internet Res 2001; 3(2): E19.
7. File T and Ryan C. Computer and Internet use in the United States: 2013. United States Census Bureau,
2014, http://www.census.gov/history/pdf/2013computeruse.pdf
8. Miller TE and Reents S. The health care industry in transition: the online mandate to change. New York:
Cyber Dialogue, Inc., 1998.
9. Tu HT. Surprising decline in consumers seeking health information. Tracking report 26, November
2011. Washington, DC: Center for Studying Health System Change.
10. Perez-Pena R. US newspaper circulation falls 10%. New York Times, 2009, p. 6.
11. Fox S and Duggan M. Health online 2013. Pew Internet & American Life Project, 2013, http://www.
pewinternet.org/files/old-media/Files/Reports/PIP_HealthOnline.pdf
12. Meyers EM, Nathan LP and Saxton ML. Barriers to information seeking in school libraries: conflicts in
perceptions and practice. Inform Res 2006; 12(2): 7.
13. Harris RM and Dewdney P. Barriers to information: how formal help systems fail battered women.
Westport, CT: Greenwood Press, 1994.
14. Marchionini G and White R. Find what you need, understand what you find. Int J Hum: Comput Int
2007; 23(3): 205237.
22
15. Kuhlthau CC. Developing a model of the library search process: cognitive and affective aspects. RQ
1988; 28: 232242.
16. Kuhlthau CC. Longitudinal case studies of the information search process of users in libraries. Libr Inf
Sci Res 1988; 10(3): 257304.
17. Kuhlthau CC. Validating a model of the search process: a comparison of academic, public and school
library users. Libr Inf Sci Res 1990; 12(1): 531.
18. White RW and Roth RA. Exploratory search: beyond the query-response paradigm (Synthesis lectures
on information concepts, retrieval & services). San Rafael, CA: Morgan & Claypool Publishers, 2009,
p. 3.
19. Dervin B and Nilan M. Information needs and uses. Annu Rev Inform Sci 1986; 21: 333.
20. DePaulo BM. Socio-psychological processes in informal help seeking. In: Ashby Wills T (ed.) Basic
processes in helping relationships. New York: Academic Press, 1982, pp. 255279.
21. Krikelas J. Information-seeking behavior: patterns and concepts. Drexel Libr Quart 1983; 19(2): 520.
22. Bawden D, Holtham C and Courtney N (eds). Perspectives on information overload. Bradford: MCB
University Press Ltd, 1999.
23. Miller JG. Information input overload and psychopathology. Am J Psychiatry 1960; 116(8): 695704.
24. Wiberley SE, Jr and Jones WG. Patterns of information seeking in the humanities. Coll Res Libr 1989;
50(6): 638645.
25. Fairer-Wessels FA. Basic community information needs of urban black women in Mamelodi, Pretoria,
South Africa. S Afr J Libr Inform Sci 1990; 58(4): 359.
26. Schoen C, Osborn R, Huynh PT, etal. On the front lines of care: primary care doctors office systems,
experiences, and views in seven countries. Health Aff 2006; 25(6): w555w571.
27. Grumbach K and Bodenheimer T. A primary care home for Americans. JAMA 2002; 288(7): 889893.
28. Moher D, Liberati A, Tetzlaff J, etal. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Int J Surg 2010; 8(5): 336341.
29. Attfield SJ, Adams A and Blandford A. Patient information needs: pre- and post-consultation. Health
Informatics J 2006; 12(2): 165177.
30. Avery JC and Braunack-Mayer AJ. The information needs of women diagnosed with Polycystic Ovarian
Syndromeimplications for treatment and health outcomes. BMC Womens Health 2007; 7: 9.
31. Baldwin AS, Cvengros JA, Christensen AJ, etal. Preferences for a patient-centered role orientation:
association with patient-information-seeking behavior and clinical markers of health. Ann Behav Med
2008; 35(1): 8086.
32. Budtz S and Witt K. Consulting the Internet before visit to general practice. Patients use of the Internet
and other sources of health information. Scand J Prim Health Care 2002; 20(3): 174176.
33. Caiata-Zufferey M, Abraham A, Sommerhalder K, etal. Online health information seeking in the context
of the medical consultation in Switzerland. Qual Health Res 2010; 20(8): 10501061.
34. Caress A-L, Luker K, Woodcock A, etal. An exploratory study of priority information needs in adult
asthma patients. Patient Educ Couns 2002; 47(4): 319327.
35. Dahm MR. Tales of time, terms, and patient information-seeking behavioran exploratory qualitative
study. Health Commun 2012; 27(7): 682689.
36. Delic D, Polasek O and Kern J. Internet health-information seekers in Croatiawho, what, and why?
Med Inform Internet Med 2006; 31(4): 267273.
37. Diaz JA, Griffith RA, Ng JJ, etal. Patients use of the Internet for medical information. J Gen Intern Med
2002; 17(3): 180185.
38. Dickerson S, Reinhart AM, Feeley TH, etal. Patient Internet use for health information at three urban
primary care clinics. J Am Med Inform Assoc 2004; 11(6): 499504.
39. Duffy OK, Iversen L and Hannaford PC. The impact and management of symptoms experienced at
midlife: a community-based study of women in northeast Scotland. BJOG 2012; 119(5): 554564.
40. Evans PH, Greaves C, Winder R, etal. Development of an educational toolkit for health professionals
and their patients with prediabetes: the WAKEUP study (Ways of Addressing Knowledge Education and
Understanding in Pre-diabetes). Diabet Med 2007; 24(7): 770777.
23
Clarke et al.
41. Fiksdal AS, Kumbamu A, Jadhav AS, etal. Evaluating the process of online health information searching: a qualitative approach to exploring consumer perspectives. J Med Internet Res 2014; 16(10): e224.
42. Gaglio B, Glasgow RE and Bull SS. Do patient preferences for health information vary by health literacy
or numeracy? A qualitative assessment. J Health Commun 2012; 17(Suppl. 3): 109121.
43. Goldsmith MR, Bankhead CR, Kehoe ST, etal. Information and cervical screening: a qualitative study
of womens awareness, understanding and information needs about HPV. J Med Screen 2007; 14(1):
2933.
44. Hogue M-CB, Doran E and Henry DA. A prompt to the web: the media and health information seeking
behaviour. PLoS ONE 2012; 7(4): e34314.
45. Hong Y, Blackwelder M, Gillis R, etal. A comparison of health information needs between patients at
a suburban hospital-based clinic and two underserved inner city clinics. AMIA Annu Symp Proc 2003;
2003: 865.
46. Hyland ME, Jones RC and Hanney KE. The Lung Information Needs Questionnaire: development, preliminary validation and findings. Respir Med 2006; 100(10): 18071816.
47. Kalantzi S, Kostagiolas P, Kechagias G, etal. Information seeking behavior of patients with diabetes mellitus: a cross-sectional study in an outpatient clinic of a university-affiliated hospital in Athens,
Greece. BMC Res Note 2015; 8: 48.
48. Karras E and Rintamaki LS. An examination of online health information seeking by deaf people. Health
Commun 2012; 27: 194204.
49. Kivits J. Informed patients and the Internet: a mediated context for consultations with health professionals. J Health Psychol 2006; 11(2): 269282.
50. Loeb SJ, Penrod J, Falkenstern S, etal. Supporting older adults living with multiple chronic conditions.
West J Nurs Res 2003; 25(1): 829.
51. Longo DR, Schubert SL, Wright BA, etal. Health information seeking, receipt, and use in diabetes selfmanagement. Ann Fam Med 2010; 8(4): 334340.
52. Mallen CD and Peat G. Discussing prognosis with older people with musculoskeletal pain: a crosssectional study in general practice. BMC Fam Pract 2009; 10: 50.
53. Malone M, Mathes L, Dooley J, etal. Health information seeking and its effect on the doctor-patient
digital divide. J Telemed Telecare 2005; 11(Suppl. 1): 2528.
54. McCaffery K and Irwig L. Australian womens needs and preferences for information about human
papillomavirus in cervical screening. J Med Screen 2005; 12(3): 134141.
55. Mead N, Varnam R, Rogers A, etal. What predicts patients interest in the Internet as a health resource
in primary care in England? J Health Serv Res Policy 2003; 8(1): 3339.
56. Medlock S, Eslami S, Askari M, etal. Health information-seeking behavior of seniors who use the
Internet: a survey. J Med Internet Res 2015; 17(1): e10.
57. Murray E, Lo B, Pollack L, etal. The impact of health information on the internet on the physicianpatient relationship: patient perceptions. Arch Intern Med 2003; 163(14): 17271734.
58. Papen U. Informal, incidental and ad hoc: the information-seeking and learning strategies of health care
patients. Lang Educ 2012; 26(2): 105119.
59. Prinjha S, Chapple A, Herxheimer A, etal. Many people with epilepsy want to know more: a qualitative
study. Fam Pract 2005; 22(4): 435441.
60. Redfern J, Ellis E, Briffa T, etal. Development and testing of innovative patient resources for the management of coronary heart disease (CHD): a descriptive study. BMC Health Serv Res 2006; 6: 95.
61. Sakai Y, Kunimoto C and Kurata K. Health information seekers in Japan: a snapshot of needs, behavior,
and recognition in 2008. J Med Libr Assoc 2012; 100(3): 205213.
62. Sawicki GS, Sellers DE, McGuffie K, etal. Adults with cystic fibrosis report important and unmet needs
for disease information. J Cyst Fibros 2007; 6(6): 411416.
63. Schinkel S, Schouten BC and van Weert JC. Are GP patients needs being met? Unfulfilled information
needs among native-Dutch and Turkish-Dutch patients. Patient Educ Couns 2013; 90(2): 261267.
64. Schwartz KL, Roe T, Northrup J, etal. Family medicine patients use of the Internet for health information: a MetroNet study. J Am Board Fam Med 2006; 19(1): 3945.
24
65. Shuyler KS and Knight KM. What are patients seeking when they turn to the Internet? Qualitative content analysis of questions asked by visitors to an orthopaedics Web site. J Med Internet Res 2003; 5(4):
e24.
66. Stavropoulou C. Perceived information needs and non-adherence: evidence from Greek patients with
hypertension. Health Expect 2012; 15(2): 187196.
67. Taha J, Sharit J and Czaja S. Use of and satisfaction with sources of health information among older
Internet users and nonusers. Gerontologist 2009; 49(5): 663673.
68. Thoonen BPA, Schermer TRJ, Jansen M, etal. Asthma education tailored to individual patient needs can
optimise partnerships in asthma self-management. Patient Educ Couns 2002; 47(4): 355360.
69. White RW and Horvitz E. Experiences with web search on medical concerns and self diagnosis. AMIA
Annu Symp Proc 2009; 2009: 696700.
70. White RW, Dumais S and Teevan J. How medical expertise influences web search interaction. New
York: ACM, 2008.
71. Wilkinson E, Randhawa G and Singh M. Quality improvements in diabetes care, how holistic have they
been? A case-study from the United Kingdom. Int J Equity Health 2014; 13: 29.
72. Xie B. Older adults health information wants in the internet age: implications for patient-provider relationships. J Health Commun 2009; 14(6): 510524.
73. Zach L, Dalrymple PW, Rogers ML, etal. Assessing internet access and use in a medically underserved
population: implications for providing enhanced health information services. Health Info Libr J 2012;
29(1): 6171.
74. White RW and Horvitz E. Web to world: predicting transitions from self-diagnosis to the pursuit of local
medical assistance in web search. AMIA Annu Symp Proc 2010; 2010: 882886.
75. Mukherjee A and Bawden D. Health information seeking in the information society. Health Info Libr J
2012; 29(3): 242246.
76. Burkell JA, Wolfe DL, Potter PJ, etal. Information needs and information sources of individuals living
with spinal cord injury. Health Info Libr J 2006; 23(4): 257265.
77. Manns PJ and May LA. Perceptions of issues associated with the maintenance and improvement of longterm health in people with SCI. Spinal Cord 2007; 45(6): 411419.
78. Matter B, Feinberg M, Schomer K, etal. Information needs of people with spinal cord injuries. J Spinal
Cord Med 2009; 32(5): 545554.
79. OGrady L. Meeting health information needs of people with HIV/AIDS: sources and means of collaboration. Health Info Libr J 2008; 25(4): 261269.
80. Carlsson ME. Cancer patients seeking information from sources outside the health care system. Support
Care Cancer 2000; 8(6): 453457.
81. Preventing chronic diseases and reducing health risk factors. Atlanta, GA: Centers for Disease Control
and Prevention, 2011, http://www.cdc.gov/healthycommunitiesprogram/overview/diseasesandrisks.htm
(accessed 31 May 2013).
82. Diet, nutrition and the prevention of chronic diseases. WHO technical report series 916, 2003, http://
www.who.int/dietphysicalactivity/publications/trs916/download/en/
83. Willett WC, Koplan JP, Nugent R, etal. (eds). Chapter 44. Prevention of chronic disease by means of
diet and lifestyle changes. In: Jamison DT, Breman JG, Measham AR, etal. (eds) Disease control priorities in developing countries. 2nd ed. Washington, DC: World Bank, 2006.
84. Mc Parland NA. Addressing the information needs of patients with prostate cancer: a literature review.
J Radiother Pract 2009; 8(1): 2333.
85. Rideout V. Generation Rx. com: how young people use the Internet for health information. Menlo Park,
CA: Henry J. Kaiser Family Foundation, 2001.
86. Cline RJ and Haynes KM. Consumer health information seeking on the Internet: the state of the art.
Health Educ Res 2001; 16(6): 671692.
87. Richards B, Colman AW and Hollingsworth RA. The current and future role of the Internet in patient
education. Int J Med Inform 1998; 50(13): 279285.
88. McGrath I. Information superhighway or information traffic jam for healthcare consumers? Clin Perform
Qual Health Care 1997; 5(2): 9093.
25
Clarke et al.
89. Lamp JM and Howard PA. Guiding parents use of the Internet for newborn education. MCN Am J
Matern Child Nurs 1999; 24(1): 3336.
90. Adelhard K and Obst O. Evaluation of medical internet sites. Methods Inf Med 1999; 38(2): 7579.
91. Tustin N. The role of patient satisfaction in online health information seeking. J Health Commun 2010;
15(1): 317.
92. Hou J and Shim M. The role of provider-patient communication and trust in online sources in Internet
use for health-related activities. J Health Commun 2010; 15(Suppl. 3): 186199.
93. Goering EM and Matthias MS. Coping with chronic illness: information use and treatment adherence
among people with diabetes. Commun Med 2010; 7(2): 107118.
94. What is OpenNotes? OpenNotes, http://www.myopennotes.org/what-is-opennotes-2/ (accessed 31
January 2014).
95. What is a patient portal? HealthIT.gov., http://www.healthit.gov/providers-professionals/faqs/whatpatient-portal (accessed 31 January 2014).
96. Woods SS, Schwartz E, Tuepker A, etal. Patient experiences with full electronic access to health records
and clinical notes through the My HealtheVet Personal Health Record Pilot: qualitative study. J Med
Internet Res 2013; 15(3): e65.
97. Ankem K. Information-seeking behavior of women in their path to an innovative alternate treatment for
symptomatic uterine fibroids. J Med Libr Assoc 2007; 95(2): 164172, e51e53.
98. Mathers SA, Chesson RA and McKenzie GA. The information needs of people attending for computed
tomography (CT): what are they and how can they be met? Patient Educ Couns 2009; 77(2): 272278.
99. Crowne DP and Marlowe D. A new scale of social desirability independent of psychopathology. J
Consult Psychol 1960; 24: 349354.
100. Chow MY, Quine S and Li M. The benefits of using a mixed methods approachquantitative with
qualitativeto identify client satisfaction and unmet needs in an HIV healthcare centre. AIDS Care
2010; 22(4): 491498.