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JHI0010.1177/1460458215602939Health Informatics JournalClarke et al.


Health information needs,

sources, and barriers of
primary care patients to
achieve patient-centered
care: A literature review

Health Informatics Journal

The Author(s) 2015
Reprints and permissions:
DOI: 10.1177/1460458215602939

Martina A Clarke

University of Nebraska Medical Center, USA

Joi L Moore

University of Missouri, USA

Linsey M Steege

University of WisconsinMadison, USA

Richelle J Koopman, Jeffery L Belden, Shannon M Canfield,

Susan E Meadows and Susan G Elliott
University of Missouri, USA

Min Soon Kim

University of Missouri, USA

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.

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Health Informatics Journal

Conclusion: Further research is warranted to assess how to create accurate and reliable health information
sources for both Internet and non-Internet users.

information need, information-seeking behavior, patient-centered care, patients, primary healthcare

Key points for decision makers

If physicians do not satisfy patients information needs, patients will turn to other sources of
information to satisfy those information needs. Projected physician workforce shortages
could make demand for information more acutely.1
Knowing patient information needs and information-seeking behavior will assist physicians
to effectively satisfy patients expectations, which could promote informed clinical decision
making and lead to increased quality of patient care.
This information can assist in improving the health information systems for personal health
information such as patient health records (PHR) and patient portals.
Since patients frequently access health information online, ensuring the availability of valid,
usable, and accessible information is a priority.

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

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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.

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Health Informatics Journal

Objective of the study

This review seeks to identify the information needs and sources that patients use frequently
when seeking information. In this review, information-seeking is defined as a basic activity
in which a person identifies their information needs and searches for the information.24,25 In
this study, information-seeking is not limited to seeking information from just technology
sources. Information seekers may use other sources, such as people and books, to satisfy their
information needs. The first objective of this study was to identify and analyze the research on
information needs of patients in a primary care setting. A primary care setting was chosen
because primary care physicians are the initial contact with patients and play an important role
in preventive and ongoing healthcare26 and account for the majority of patient visits for conventional illnesses.27 The second objective was to determine the information sources used to
satisfy those information needs especially the Internet because of its accessibility. The third
objective was to identify barriers to accessing the identified information sources, specifically
Internet-based sources. Knowing what information patients need and what source(s) they use
to satisfy these information needs will assist physicians to effectively satisfy patients expectations, which may improve informed clinical decision making and potentially raise the quality
of patient care.

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)

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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.

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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

Information needs of patients

The first objective of this article was to identify the information needs and information-seeking
behavior of patients in a primary care setting. The following information needs were commonly mentioned in more than one of 23 articles pertinent to information needs (Table 2): information for an
illness or medical condition,29,36,38,41,4345,49,53,54,58,59,61,62,64,67,72,75 nutrition,3638,40,45,47,56,61,62,64,67,71,72
and alternative medicines or new/experimental treatment available.29,37,38,59,6164,67 The complete list
of information needs is found in Table 2.

Information sources of patients

The second objective of this study was to identify the sources used by patients when satisfying
their information needs. Most researchers reported patients using multiple sources to address information needs; however, the following information sources were identified most frequently in the
19 articles pertinent to information sources (Table 3): Internet,3032,37,39,44,45,47,51,53,56,58,59,61,64,66,67,73,75
physicians,30,31,37,39,42,44,45,47,51,53,56,59,61,66,67 television,32,37,39,44,45,47,50,51,53,56,61,66,67,73 and magazines.31,32,37,47,50,51,53,56,59,61,66,67 Television and magazines were more found in the older studies, with
Internet becoming more predominant in the newer studies. The full list of information sources is
found in Table 3. Four articles mentioned specific websites accessed by patients when satisfying
information needs.30,50,51,67 These websites were as follows: an American support group;30 chat
rooms;30 email lists;30 Parkinsons Disease Foundation;50 Ostomy Support Group;50 diabetes.
com;51 WebMD;51 American Diabetes Association;51 Mayo Clinic;51 websites devoted to cooking,
exercise, and stress reduction;51 Alzheimers Association;67 and well-known hospitals and established organizations.67

Barriers to information access to the Internet

The third objective of this study was to identify the barriers that affected patients use of the
Internet and other information sources. Factors affecting information-seeking behavior included
the following: age,57,61,75 education,37,55,57,61 and household income.37,55,57,61 Younger
patients,57,61,75 patients with higher educational background,37,55,57,61 and patients with higher
household income37,55,57,61 were also more likely to seek information and to use the Internet as
an information source. Sources may be available to patients, but there may be barriers to accessing relevant information such as deficiency in reliable, credible information, and Internet search

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United States


United States


in Denmark

conducted in
the United
States (n=17)

Baldwin etal.31

Budtz and Witt32



conducted in
England (n=10)

conducted in
England (n=16)

Attfield etal.29


Avery and



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27 patients recruited in the waiting room

of 14 medical practices in the Italian part of
Switzerland between 2005 and 2007 who
had searched for health information on
the Internet related to a problem that was
discussed during a medical encounter

Two groups of 8 from a Patient Advice

and Liaison Service (PALS) patient panel
attached to a hospital in the south of
England (average age 64years) and mature
students studying toward an MSc in
interaction (average age 31years)
7 women were recruited from a previous
nutritional study of polycystic ovarian
syndrome (PCOS) undertaken jointly by
the Commonwealth Scientific Industrial
Research Organizations Division of Health
Sciences and Nutrition (CSIRO HSN) with
the University of Adelaides Department
of Obstetrics and Gynecology, and from
the Polycystic and the Ovarian Syndrome
Association of Australia (POSAA), a
support group for women with PCOS
Patients with a diagnosis of hypertension
who were recruited from the Iowa City VA
Medical Center (VAMC), the Minneapolis
VAMC, and four affiliated communitybased outpatient clinics as part of a larger
hypertension-related trial
Patients in the waiting rooms of one rural
and three metropolitan general practices in

Sample population

Illustrate the motives of online health

information-seeking in the context of the
doctorpatient relationship in Switzerland

Describe where patients in Danish general

practice get information about health and
disease and how they prepare for a visit to
their general practitioner (GP)

Investigate how patients preferred role

orientation is associated with informationseeking behavior and clinical markers of
health in a chronically ill population

Report findings of an exploratory study

about the information women diagnosed
with PCOS want to know about their
condition and the consequences of this
information for future treatment and
health outcomes

Present findings from a study of

information-seeking behavior by National
Health Service patients which explored
motivational triggers for information needs



Only two patients never looked for health

information. 20% had used the Internet to get
health information. Women used information
sources more than men. Family, friends, or
neighbors were the most commonly used source
Online health information-seeking are identified
in the needs for acknowledgment, reduction in
uncertainty, and perspective. Searching information
online was also encouraged by personal and
contextual factors

Preference for a patient-centered role was

associated with seeking medication information
from various sources

Patients initiate information-seeking to assess

whether they need clinical intervention, in
preparation for the patientdoctor consultation
and to verify the diagnosis or treatment
based on that consultation. Confidence in
health practitioners is one key motivation for
Information is needed in order to participate
in shared decision making. The Internet proved
to be a most versatile and beneficial source of
information source for women with PCOS


Table 1. Summary of studies selected for evaluation on the information needs and information-seeking behavior of patients sorted alphabetically.

Clarke et al.



United States

United States

in Croatia

conducted in
the United
States (n=512)

conducted in
the United
States (n=315)

Delic etal.36

Diaz etal.37

Dickerson etal.38


in Australia


Caress etal.34





Table I. (Continued)

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Patients from primary care practice sites

located in urban Buffalo, NY, were used
in this study: Academic Medical Services
(AMS), Primary Health Care Clinic (PHC),
and Matthew J. Gajewski Clinic (MJG)

Patients from the billing files of a primary

care internal medicine private practice
located in Providence, Rhode Island

Users of the health portal Cybermed in


32 patients in North West England from

three group practices, one single-handed
practice within a health center, and
specialist respiratory center in a teaching
Patients from a convenience sample of
undergraduate students not in need of
immediate medical care but were asked
to share their experience as patients in

Sample population

Survey a cross section of patients

presenting to three urban primary care
clinics to understand online health
information search behaviors

Determine the percentage of primary

care patients who use the Internet for
health information, types of information
sought, patients perceptions of the quality
of information, and if they discuss this
information with their doctors

Investigate the characteristics of the

Internet users in Croatia related to
seeking health information, which
information they seek, the reasons, and
the outcomes of that information on them

Explore patients and physicians

perceptions of the use of medical
terminology in patientphysician

Gain insight into patients perspectives

on key information needs regarding their


Information needs identified: current medications,

new therapies, medication side effects, triggers of
an asthma attack, lifestyle issues, asthma causation,
effects of asthma, long-term outcome. and
symptom control
With regard to time and terminology, patients
and physicians described four major factors
that they associated with decreased patient
information-seeking behavior: (1) time pressure,
(2) perceptions of wasting time, (3) perceptions of
authority, and (4) displays of ignorance
The leading motivation for seeking medical
information was unanswered questions after
visiting a physician. Most respondents went
online to seek information on a specific illness
or condition. Patients seek more information
online when information from their physician was
53.5% used the Internet for medical information.
Those using the Internet for medical information
were more educated and had higher incomes
(p<0.001) Respondents used the Internet for
information on a broad range of medical topics.
Sixty percent felt that the information on the
Internet was the same as or better than
information from their doctors
33% of respondents who accessed the Web
to search for health information. Common
information searched included information about a
physical illness and nutrition/fitness. Many patients
(22%) relied on friends and family to navigate the
Web, and 45% of patients information search was
unrelated to their clinical visit


Health Informatics Journal


United States

United States


Focus groups
and interviews
in Canada
(n=appx. 61)

Focus groups
(n=3 focus
groups of 56

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


in Scotland

Duffy etal.39




Table I. (Continued)

Individuals who received care at either

Kaiser Permanente Colorado (KPCO) or
Denver Health and Hospital Authority
(DHHA), 40years and older and having at
least two of the following: diabetes mellitus,
hypertension, hypercholesterolemia,
smoking, and body mass index >30, and
had completed a primary care clinic visit in
the past 12months
38 women, 33 who had recently been for
cervical screening and five who attended
a recent colposcopy appointment, took
part in a series of seven focus groups (each
comprising 38 women) between May
2005 and April 2006

Adult, English-speaking members of the

Olmsted County, MN community and
Mayo Clinic patient, employees, and family

Service users to provide maximum

variation in gender and experience of
diabetes and pre-diabetes

Women aged 4554years registered with

16 general practices in Northeast Scotland

Sample population

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Explore womens attitudes toward the

information about human papillomavirus
(HPV) provided during cervical screening
and to describe womens HPV information

Describe preferences of patients with

multiple risk factors for cardiovascular
disease with varying health literacy and
numeracy abilities for receiving health

Engage in in-depth discussions with

community members to gain a deeper
understanding of online healthsearching behavior in order to inform
future developments of personalizing
information-searching and content delivery

Identify key messages about pre-diabetes

and to design, develop, and pilot an
educational toolkit to address the
information needs of patients and health

Determine the frequency and management

of menopausal symptoms among
community-dwelling women



Information needs identified: prognosis, diagnosis,

treatment, general information on the disease, and
implications for sexual partners

Just over half of the women had sought

information from their GP or practice nurse,
although 7% of these women rated the information
they received as not at all useful. Other sources of
information were book/magazines, Internet, and
Delivering the Ways of Addressing Knowledge
Education and Understanding in Pre-diabetes
(WAKEUP) toolkit in a practice setting is both
feasible and acceptable. However, further work is
needed to establish the best mode of delivery and
establish the effectiveness of interventions based
on the toolkit
The motivations for online health searching:
(1) symptom troubleshooting, (2) searching to
enhance a clinic visit, and (3) proxy searching. The
Internet was a potentially valuable tool to find
information about health and medical conditions;
however, information overload could be caused
by the vast amount of information found on the
Individuals with inadequate functional health
literacy and/or low numeracy named either their
personal doctor or the clinic in which they receive
their primary care as their main source for health
information most preferred way to receive health
information was face-to-face from a healthcare
provider so that they could ask questions if they
did not understand the information


Clarke et al.



United States

groups and
in England


Focus groups
conducted in
the United
States (n=39)

Hyland etal.46

Kalantzi etal.47

Karras and

Hong etal.45

United States


in Australia
conducted in
the United
States (n=116)

Hogue etal.44




Table I. (Continued)

Patients who were electronically coded

for the diagnosis of chronic obstructive
pulmonary disease (COPD) were recruited
from three primary care practices. A
convenience sample of patients (with a
diagnosis of COPD) was recruited from
a database of patients who had attended
pulmonary rehabilitation
Adult (>18years old) Type 1 or 2
diabetic patients who were capable of
understanding the questionnaire and being
followed up at the outpatient Diabetes
Clinic and the outpatient Diabetic Foot
Clinic of the University affiliated Laiko
General Hospital, in Athens, Greece
A convenience sample of 39 participants
were recruited through one of the four
Deaf universities in the United States
and a recreation club for Deaf people,
both of which are located in a mid-sized,
Northeastern city

Patients at a suburban hospital-based clinic

(Froedtert Internal Medicine West Clinic)
and at two clinics located in underserved
areas of the inner city (Family House Clinic
and Lisbon Avenue Health Center)

Randomly selected adults (18+ years)

residing in the Hunter Region of New
South Wales Australia

Sample population

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How deaf people perceive, access, and

utilize the Internet as a health information

Examine the information-seeking behaviors

of patients with Type 1 and Type 2

Create a brief questionnaire to be

completed by COPD patients prior to
the clinical encounter to assist health
professionals identify areas of information

Determine and compare the health

information-seeking habits and needs
of outpatients at a suburban hospitalbased clinic and at two clinics located in
underserved areas of the inner city

Investigate media influence on consumers

health-related behaviors


Patients mentioned diet (61.4%) and diabetic

complications (41.9%) as the most important
information needs and the treating physician
(94.6%) as their information resources. The
Internets importance and frequency of use was
ranked 7th. Main barriers to information-seeking
were lack of time and cost
Varied use of the Internet was reported, ranging
from avoidance of the Internet to its daily use.
Findings illustrate how deaf respondents access
the Internet to acquire health information by using
reputable health websites

Both populations mostly trust in their physician,

educational institutions, and the government as
a source of information. Inner city patients place
more trust in media (92%) and commercial sources
(advertisements) (67%), and pharmaceutical
companies (85%) than hospital-based patients
(84%, 45%, and 71%)
Information needs vary between patients but
tend to be high for non-drug-related aspects of
self-management COPD. Patients were interested
in information on drugs, physical activity, health
promotions, and self-care

Respondents usually gain information about a

medical condition from doctors (81.3%) the
Internet (42.2%), the media (14%), and family or
friends (11.8%)


Health Informatics Journal


United States

United States


Focus group
conducted in
the United
States (n=37)

Focus groups
conducted in
the United
States (n=46)

in England

Loeb etal.50

Longo etal.51

Mallen and Peat52


conducted in
the United




Table I. (Continued)

Patients aged 50years and over consulting

one of five Central Cheshire general
practices with non-inflammatory
musculoskeletal pain between September
2006 and March 2007

Patients who received diabetes care from

2 clinics in a Midwestern city. Participants
were recruited to ensure diversity in age,
race, and sex typical of a family medicine

Mentally alert community-dwelling adults,

aged 55years or older, with at least
two chronic conditions recruited from
group events offered through a senior
membership program at a community
hospital in a mid-Atlantic state

Internet users who were searching for

health information online recruited on UK
websites devoted to healthy eating, fitness,
and general health

Sample population

Gauge whether and why older patients

with musculoskeletal pain think prognostic
information is important, and how often
they felt prognosis was discussed in the
general practice consultation

Identify how individuals with diabetes seek

and use healthcare information

Explore the strategies commonly

employed by older adults to manage
multiple chronic conditions

Investigates how individuals use of the

Internet for finding health information
may affect the relationship between health
professionals and patients


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Participants turned to the Internet for health

information because they felt that they lack
information from doctors who have time
constraints or are unwilling to discuss their health
matters. Seeking health information first emerges
as a complement to the medical talk that is judged
Information was described as abundant from
sources including libraries, magazines, medically
oriented radio talk shows, newspapers, television,
and the senior membership programs quarterly
newsletter. Older adults preferred information
from peers who lived with that condition over an
expert opinion
Participants identified multiple information sources,
including information from the Internet, television,
and newspaper, as well as friends and healthcare
professionals which reflects the nature of diabetes,
which touches all aspects of daily living, including
relationships with family and friends, medications,
cooking and portion control, exercise, and food
Prognostic information is thought to be important
among older people with musculoskeletal pain.
yet discussions occur infrequently in primary
care. Barriers to prognostic communication and
the exact information needs of patients are still
unknown and warrant further research


Clarke et al.

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Murray etal.57

conducted in
the United

Seniors of a local organization (Protestants

Christelijke Ouderen Bond) affiliated with
a national organization who had an email
address listed with their organization


conducted in
the United
Survey (n=118)

Mead etal.55

Medlock etal.56

Patients 16+years in the waiting rooms of

an inner city practice and a second practice
in Manchester suburb


in Australia

United States

Households selected through random

digit dialing generated from the Genesys
Sampling System in regions in central city,
suburban, and rural areas

Twenty women diagnosed with an HPV

infection (koilocytosis) on a conventional
Pap smear were recruited from general
practice, family planning clinics and
specialist gynecologists in Sydney, NSW,
and the surrounding area using nonrandom, purposive sampling to recruit a
heterogeneous sample

Individuals using health services using

SureStart services in five districts within
the inner London area, parents, and two
groups of GPs

McCaffery and


focus groups
in London

Sample population

Malone etal.53




Table I. (Continued)

Determine the publics use of the Internet

for health information

Identify what factors predict patients

interest in using Internet health
information in the light of poor uptake of
a free, guided Internet service in one inner
city general practice
Learn what resources seniors who use
the Internet use and trust for healthcare

Explore the possible effect of physical,

social, and cultural geography on Internet
use, differences between online and
offline seekers of health information, and
professional attitudes to patients use of
the Internet in their search for health
Assess information needs for women
participating in cervical screening for HPV


When in need of health information, preferred

sources were the Internet (46/105, 43.8%),
magazines 38/105, 36.2%, health professionals
(18/105, 17.1%), and no information-seeking
(3/105, 2.8%)
Socioeconomic factors were most strongly
associated with looking for information

Women wanted further information on different

HPV viral types, transmission, implications
for sexual partners, prevalence, latency and
regression of HPV, their management options,
and the implications of infection for cancer risk
and fertility. Womens experience of searching
the Internet for further information about HPV
was reported as difficult and anxiety provoking
from grouping the disease with other sexually
transmitted diseases
Access, demographics, and motivational factors
all influence patients interest in the Internet as a
health resource

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


Health Informatics Journal

conducted in
the United
conducted in
England (n=38)




conducted in
Japan (n=1189)

Sakai etal.61

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Adults in Japan between the ages of 15 and


Participants from a local hospital clinic

were included if they had at least one of
the relevant coronary heart disease (CHD)
risk factor and if they volunteered to
review the leaflet

Maximum variation sample of 35 men and

women, throughout the United Kingdom
with experience of epilepsy and three
carers of someone with epilepsy recruited
through GPs, neurologists, support groups,
and charities


conducted in

Adults from three literacy and four English

Speakers of Other Languages (ESOL)
classes across north-west England

Sample population



Redfern etal.60

Prinjha etal.59



Table I. (Continued)

Explore the latest information-seeking

behavior among healthcare consumers
in Japan

Develop and test a series of risk factor

modules and corresponding patient
information leaflets for secondary
prevention of CHD

Explore why, at the turn of the 21st

century, many people with epilepsy still
want more information

Discuss the information-searching and

learning strategies of 45 adults living in the
north-west of England



Consultants played an important role in giving

information. People also got information from:
consultants, through epilepsy organisations, first
aid training, leaflets, books, magazines, newspapers,
videos, and the Internet. Patients knew relatively
little about their medication or about the causes
of epilepsy. Our data help to explain why this
information may be so important to people
All high-cholesterol participants wanted to know
their own and the recommended cholesterol
level, 66% wanted information about cholesterol
testing and medications. All high blood pressure
(BP) participants requested information about the
effects of BP on the heart and about medications
for BP. Physically inactive participants expressed
a need for simple and practical information about
safe activities. Smokers wanted information about
how to quit and none wanted information about
Most common information need was information
on a specific disease. Physicians were the first
choice as an information source and the Internet
has gained increasing popularity as an information
resource. Half the participants were willing to read
free, Japanese academic or professional medical
journal articles

Individuals learned about health and disease from

the Internet and health books and asking others
for support. Learning included gaining medical
knowledge and learning to engage with specific
texts, such as websites


Clarke et al.

in The
in The
conducted in
the United

Sawicki etal.62


United States

in Greece

groups and
conducted in
the United
States (n=53)


Taha etal.67

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53 adults ranging in age from 51 to

85years from the local community through
newspaper advertisements, flyers in senior
centers, and our database of participants
from past studies who indicated interest in
being contacted for future studies

Content analysis was performed on freetext queries submitted to the website of

the University of Washington Department
of Orthopedics and Sports Medicines Ask
a Question function during March and
June of 2002, which features multimedia
information on arthritis, orthopedics, and
sports-medicine topics
Individuals enrolled in the Centre for
the Treatment of Hypertension in
Hippocration General Hospital of Athens

Patients age 18years or older from the

waiting rooms of 13 primary care offices
affiliated with the MetroNet practicebased research network (PBRN) in the
metropolitan Detroit area

United States

United States

Patients, with an appointment, in the

waiting room, of six GPs in six practices in
three multicultural cities in the Netherlands


Computer logs
conducted in
the United

Prospective, longitudinal panel study of

adults 18years of age or older receiving
care at one of ten participating Cystic
Fibrosis Centers

Sample population



Shuyler and

Schwartz etal.64

Schinkel etal.63



Table I. (Continued)

Determine the extent of access to the

Internet, and among those with access,
the types of health information sought;
how they search for that information;
and how they assess the accuracy of the
Analyzes what people search for when
they use a health education website
offering information about arthritis,
orthopedics, and sports-medicine topics,
determine who is performing these
searches, and examine the similarities and
differences among questions submitted by
website visitors from different countries
Identify differences between perceived
information needs for hypertension and
medication to treat it, to explore the
information channels used by patients, and
to test what type of information is more
important to adhere to medication
Determine older adults health information
needs, the perceived usefulness of sources
of health information, and if there are
differences in perceptions and use of
health information between Internet users
and nonusers

Assess unfulfilled information needs of

native-Dutch and TurkishDutch GP
patients in the Netherlands

Understand the information needed by

adults with cystic fibrosis (CF) to manage
their illness


Nonusers of Internet were found to be just as

satisfied with the health information they find as
those who search for information online. Also,
nonusers are more likely to make healthcare
decisions based on information found offline
than Internet users who have access to more

The doctor remains the primary information

source, while the media and magazines on health
issues were reported more frequently than the
family and the pharmacist

Finding relevant health information and support

on the Internet may help people to become more
actively involved in making decisions that affect
their health

Adults with CF rated information on treatment

topics as most important. In contrast, patients
were more likely to report information needs on
disease self-management and future planning as
TurkishDutch patients reported higher
information need than native-Dutch patients
on prognosis, prevalence, physical examination,
explanation of medical terms, alternative medicine,
and procedures at other hospital/other caregivers
Age, sex, race, education, and income were each
significantly associated with Internet access.
Disease-specific information was most frequently
sought, followed by medication information, and
then information about nutrition and exercise


Health Informatics Journal

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Zach etal.73


conducted in
the United
States (n=20)
conducted in
England (n=53)

United States

conducted in
the United
States (n=515)

White and


United States


United States

Computer logs
conducted in
the United

White etal.70

Wilkinson etal.71

United States


Computer logs
conducted in
the United


Thoonen etal.68


White and



Table I. (Continued)

Face-to-face anonymous interviews with

patients waiting for appointments at the

South Asian and White European patients

over 16years with a recent (<1year)
diagnosis of diabetes were recruited in
Luton, West London, and Leicester
Adults 60years and older

GPs selected all known asthma patients

from their own practice population aged
between 16 and 60years with a need for
corticosteroids based on criteria from
national guidelines on the treatment of
Log entries including a user identifier, a
timestamp for each page view, and the
URL of the page visited by people who
had consented to provide usage data via a
widely distributed browser toolbar over a
period of 6months from September 2008
until February 2009 inclusive
A set of people interested in the medical
domain separated by experts from
nonexperts based on whether they had
ever visited or queried for the PubMed
search engine
Randomly chosen employees within
Microsofts extended campus in Redmond,

Sample population

Improve communication between an urban

health center and the community it serves

Investigate older adults preferences for

health information and participation in
decision making

Investigate patients experiences upon a

diabetes diagnosis

Explore lay peoples activities and

experiences with using Web search to
pursue explanations for symptoms

How medical domain experts search the

Web for information related to their
expertise, as compared with nonexperts

Explore the potential for the Web to

induce costly and potentially unnecessary
engagements with health professionals

Studies the effects of patient education,

tailored to individual needs of patients
as part of an asthma self-management


64% of all participants identified the center or

other healthcare providers as their primary
sources of information. Most common information
needs among participants were test results and
reminders about appointments

A better understanding of consumer experience

regarding the use of the Web to interpret
symptoms can assist in the refinement of
healthcare content and retrieval
Twenty-one of 47 (45%) reported unmet support
and information needs at diagnosis

Identifying domain experts makes it possible

to provide expert query suggestions and site
recommendations to non-expert users, and to
personalize search results based on expertise

Findings have implications for reducing costly

and unnecessary healthcare resource utilization
through refinements of ranking algorithms and
search interfaces

Use of this tailored education program improved

the GPpatient interaction within the context
of a clinically effective asthma self-management


Clarke et al.


Health Informatics Journal

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

Information on an illness or medical condition

Alternative medicines or experimental treatment
Exercise and physical activity
Information about healthcare providers
Side effects of drugs/treatment
Health promotion/lifestyle
Health insurance and policies, test availability, test results,
sexual function/fertility, psychological issues, mental health
Health or medical products, Medicare, Medicaid, news
about health policy issues, current health topics, quality of
life, housing, legal issues/disability rights, social relationships,
medical terms, reminders, disease complications



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

Family and friends
Popular books
Email or support groups
Medical books
Other healthcare professional
Public library
Medical journals
Specialist, others with disease, seminar/course/lecture
Dietician, Email with a healthcare provider, first aid



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Clarke et al.

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
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

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Health Informatics Journal

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
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

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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

Principle 5: information seekers expect emotional support

Findings from this review show that patients sought information from email and support groups to
satisfy their information need.30,32,51 Women diagnosed with polycystic ovarian syndrome sought
out information from support groups and involved themselves in activities that provided contact
with other sufferers. This not only allowed women to share their experiences with each other but
also they were able to gain information concerning their condition on both an individual and a
more general level.30 Patients diagnosed with diabetes in Longo etal.s51 study used relatives and
friends as a sounding board to discuss the disease and its management, as well as clarify any contradictory information received from health professionals and the media. Healthcare providers
should make emotional support available to all patients.

Principle 6: people follow habitual patterns of seeking information

When an information source has been helpful in the past, users will revisit that source for another
need, unless some barrier intervenes. People develop information habits in relation to the sources
they consult.12 In the context of this study, patients have confidence in the knowledge of their physician, which may be the reason why patients use their physicians as one of their primary sources
for health information.30,59,67,7679,97,98 Although patients are actively seeking information on their
own, a national survey reported that 72percent of US adults still receive information, care, or support from a doctor or other healthcare professional.11 However, because of physicians lack of
accessibility, patients have addressed this deficiency using the Internet as an information source.
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.59,67,76,78,79,97

Validity of selected articles research methodologies

We must recognize that our findings are heavily dependent on the research methodologies
employed in the articles included in this review. A range of research methodologies was used in
the selected articles. Questionnaires and surveys were a very common method for collecting

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Health Informatics Journal

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

Limitations of this review

This review concentrates only on published studies. A possibility of publication bias can be
included and was not investigated. This review also excludes non-English language studies,
which may suggest different results. Some studies were Internet-based, which may have biased
toward the Internet as a preferred source among patients. The samples used within the articles
need to include more diverse patient groups with larger sample sizes for generalization of the
results. This review excluded the information needs of children, specialist patients, and caregivers
because of their unique information needs, and in the case of children and adolescents, the unique
roles of cognitive development and parents as information proxies. Further investigation should
be conducted on information needs of pediatric patients and caregivers for results to be generalizable to all patient groups. This review focused on identifying information needs and sources for
primary care patients. However, it may be important to better understand the health-related information needs of a more general population. By focusing on primary care patients, we may miss
information needs or sources of people who are not yet patients. People may use the Internet to
avoid being a patient. That is, they may want to avoid visiting the doctor, because (1) they do
not have time to visit the doctor, (2) they consider or suspect that their problem is a minor complaint not worthy of a doctors visit, or (3) they do not have a doctor because they have previously
been healthy.

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

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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.

The author(s) received no financial support for the research, authorship, and/or publication of this article.

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