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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.

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

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.

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 family’s 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, 73 percent 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 33 percent to 18 percent, 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 52 percent 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 of the patients. Harris and Dewdney’s 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 et al. describe information-seeking as a situation-sensitive sense-making process. The sense-making model focuses on the cognitive gap that hinders a user’s 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 DePaulo’s²⁰ steps in help-seeking, Krikelas’²¹ model of information-seeking, and Dervin et al.’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-seeker’s 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 health-related questions, which may cause information overload. Bawden et al.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.

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.

Method

Search strategy and study selection

This review selectively adopted the Preferred Reporting Items for Systematic reviews and Meta-Analyses (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

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.

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) 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 article’s 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 information-seeking 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,^{29,30,34,43,46,49,52,53,55,58–60,71,73,75} 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,^{29,30,32–35,40,49,54,58–60,71–73,75} 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

Table 1.

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

Study	Research method	Place	Sample population	Aim	Findings
Attfield et al.²⁹	Interviews conducted in England (n = 16)	England	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 64 years) and mature students studying toward an MSc in human–computer interaction (average age 31 years)	Present findings from a study of information-seeking behavior by National Health Service patients which explored motivational triggers for information needs	Patients initiate information-seeking to assess whether they need clinical intervention, in preparation for the patient–doctor consultation and to verify the diagnosis or treatment based on that consultation. Confidence in health practitioners is one key motivation for information-seeking
Avery and Braunack-Mayer³⁰	Interviews conducted in England (n = 10)	England	7 women were recruited from a previous nutritional study of polycystic ovarian syndrome (PCOS) undertaken jointly by the Commonwealth Scientific Industrial Research Organization’s Division of Health Sciences and Nutrition (CSIRO HSN) with the University of Adelaide’s Department of Obstetrics and Gynecology, and from the Polycystic and the Ovarian Syndrome Association of Australia (POSAA), a support group for women with PCOS	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	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
Baldwin et al.³¹	Questionnaire (n = 189)	United States	Patients with a diagnosis of hypertension who were recruited from the Iowa City VA Medical Center (VAMC), the Minneapolis VAMC, and four affiliated community-based outpatient clinics as part of a larger hypertension-related trial	Investigate how patients’ preferred role orientation is associated with information-seeking behavior and clinical markers of health in a chronically ill population	Preference for a patient-centered role was associated with seeking medication information from various sources
Budtz and Witt³²	Interview conducted in Denmark (n = 93)	Denmark	Patients in the waiting rooms of one rural and three metropolitan general practices in Copenhagen	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)	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
Caiata-Zufferey et al.³³	Interviews conducted in the United States (n = 17)	United States	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	Illustrate the motives of online health information-seeking in the context of the doctor–patient relationship in Switzerland	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
Caress et al.³⁴	Interview (n = 32)	England	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 hospital	Gain insight into patients’ perspectives on key information needs regarding their asthma	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
Dahm³⁵	Interview conducted in Australia (n = 17)	Australia	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 Australia	Explore patients’ and physicians’ perceptions of the use of medical terminology in patient–physician communication	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
Delic et al.³⁶	Questionnaire conducted in Croatia (n = 949)	Croatia	Users of the health portal Cybermed in Croatia	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	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 insufficient
Diaz et al.³⁷	Survey conducted in the United States (n = 512)	United States	Patients from the billing files of a primary care internal medicine private practice located in Providence, Rhode Island	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	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
Dickerson et al.³⁸	Survey conducted in the United States (n = 315)	United States	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)	Survey a cross section of patients presenting to three urban primary care clinics to understand online health information search behaviors	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
Duffy et al.³⁹	Questionnaire conducted in Scotland (n = 4407)	Scotland	Women aged 45–54 years registered with 16 general practices in Northeast Scotland	Determine the frequency and management of menopausal symptoms among community-dwelling women	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 television
Evans et al.⁴⁰	Focus groups and interviews conducted in Canada (n = appx. 61)	Canada	Service users to provide maximum variation in gender and experience of diabetes and pre-diabetes	Identify key messages about pre-diabetes and to design, develop, and pilot an educational toolkit to address the information needs of patients and health professionals	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
Fiksdal et al.⁴¹	Focus groups (n = 3 focus groups of 5–6 individuals)	United States	Adult, English-speaking members of the Olmsted County, MN community and Mayo Clinic patient, employees, and family visitors	Engage in in-depth discussions with community members to gain a deeper understanding of online health-searching behavior in order to inform future developments of personalizing information-searching and content delivery	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 Internet
Gaglio et al.⁴²	Survey conducted in the United States (n = 150)	United States	Individuals who received care at either Kaiser Permanente Colorado (KPCO) or Denver Health and Hospital Authority (DHHA), 40 years 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 12 months	Describe preferences of patients with multiple risk factors for cardiovascular disease with varying health literacy and numeracy abilities for receiving health information	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
Goldsmith et al.⁴³	Focus groups conducted in England (n = 38)	England	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 3–8 women) between May 2005 and April 2006	Explore women’s attitudes toward the information about human papillomavirus (HPV) provided during cervical screening and to describe women’s HPV information needs	Information needs identified: prognosis, diagnosis, treatment, general information on the disease, and implications for sexual partners
Hogue et al.⁴⁴	Survey, questionnaire conducted in Australia (n = 800)	Australia	Randomly selected adults (18+ years) residing in the Hunter Region of New South Wales Australia	Investigate media influence on consumers’ health-related behaviors	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%)
Hong et al.⁴⁵	Survey conducted in the United States (n = 116)	United States	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)	Determine and compare the health information-seeking habits and needs of outpatients at a suburban hospital-based clinic and at two clinics located in underserved areas of the inner city	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%)
Hyland et al.⁴⁶	Focus groups and questionnaires conducted in England (n = 363)	England	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	Create a brief questionnaire to be completed by COPD patients prior to the clinical encounter to assist health professionals identify areas of information need	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
Kalantzi et al.⁴⁷	Questionnaire (n = 203)	Greece	Adult (>18 years 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	Examine the information-seeking behaviors of patients with Type 1 and Type 2 diabetes	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 Internet’s importance and frequency of use was ranked 7th. Main barriers to information-seeking were “lack of time” and “cost”
Karras and Rintamaki⁴⁸	Focus groups conducted in the United States (n = 39)	United States	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	How deaf people perceive, access, and utilize the Internet as a health information source	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
Kivits⁴⁹	Interview conducted in the United Kingdom (n = 31)	United Kingdom	Internet users who were searching for health information online recruited on UK websites devoted to healthy eating, fitness, and general health	Investigates how individuals’ use of the Internet for finding health information may affect the relationship between health professionals and patients	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 unsatisfactory
Loeb et al.⁵⁰	Focus group conducted in the United States (n = 37)	United States	Mentally alert community-dwelling adults, aged 55 years 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	Explore the strategies commonly employed by older adults to manage multiple chronic conditions	Information was described as abundant from sources including libraries, magazines, medically oriented radio talk shows, newspapers, television, and the senior membership program’s quarterly newsletter. Older adults preferred information from peers who lived with that condition over an “expert” opinion
Longo et al.⁵¹	Focus groups conducted in the United States (n = 46)	United States	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 practice	Identify how individuals with diabetes seek and use healthcare information	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 shopping
Mallen and Peat⁵²	Questionnaires conducted in England (n = 502)	England	Patients aged 50 years and over consulting one of five Central Cheshire general practices with non-inflammatory musculoskeletal pain between September 2006 and March 2007	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	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
Malone et al.⁵³	Questionnaire, focus groups conducted in London (n = 224)	United Kingdom	Individuals using health services using SureStart services in five districts within the inner London area, parents, and two groups of GPs	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 information	The effect of the Internet on health information-seeking behavior has been imposed on patterns of health information-seeking such as social, cultural, and economic divisions
McCaffery and Irwig⁵⁴	Interviews conducted in Australia (n = 19)	Australia	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 non-random, purposive sampling to recruit a heterogeneous sample	Assess information needs for women participating in cervical screening for HPV	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. Women’s 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
Mead et al.⁵⁵	Questionnaire conducted in the United Kingdom (n = 660)	United Kingdom	Patients 16+ years in the waiting rooms of an inner city practice and a second practice in Manchester suburb	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	Access, demographics, and motivational factors all influence patients’ interest in the Internet as a health resource
Medlock et al.⁵⁶	Survey (n = 118)	The Netherlands	Seniors of a local organization (Protestants Christelijke Ouderen Bond) affiliated with a national organization who had an email address listed with their organization	Learn what resources seniors who use the Internet use and trust for healthcare information	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%)
Murray et al.⁵⁷	Survey conducted in the United States (n = 3209)	United States	Households selected through random digit dialing generated from the Genesys Sampling System in regions in central city, suburban, and rural areas	Determine the public’s use of the Internet for health information	Socioeconomic factors were most strongly associated with looking for information
Papen⁵⁸	Observation, interview conducted in the United Kingdom (n = 45)	United Kingdom	Adults from three literacy and four English Speakers of Other Languages (ESOL) classes across north-west England	Discuss the information-searching and learning strategies of 45 adults living in the north-west of England	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
Prinjha et al.⁵⁹	Interviews conducted in England (n = 38)	England	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	Explore why, at the turn of the 21st century, many people with epilepsy still want more information	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
Redfern et al.⁶⁰	Interviews, systematic reviews, questionnaires conducted in England	England	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	Develop and test a series of risk factor modules and corresponding patient information leaflets for secondary prevention of CHD	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 why
Sakai et al.⁶¹	Survey conducted in Japan (n = 1189)	Japan	Adults in Japan between the ages of 15 and 79 years	Explore the latest information-seeking behavior among healthcare consumers in Japan	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
Sawicki et al.⁶²	Questionnaires conducted in The Netherlands (n = 233)	The Netherlands	Prospective, longitudinal panel study of adults 18 years of age or older receiving care at one of ten participating Cystic Fibrosis Centers	Understand the information needed by adults with cystic fibrosis (CF) to manage their illness	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 unmet
Schinkel et al.⁶³	Questionnaires conducted in The Netherlands (n = 191)	The Netherlands	Patients, with an appointment, in the waiting room, of six GPs in six practices in three multicultural cities in the Netherlands	Assess unfulfilled information needs of native-Dutch and Turkish–Dutch GP patients in the Netherlands	Turkish–Dutch 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
Schwartz et al.⁶⁴	Survey conducted in the United States (n = 1289)	United States	Patients age 18 years or older from the waiting rooms of 13 primary care offices affiliated with the MetroNet practice-based research network (PBRN) in the metropolitan Detroit area	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 information	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
Shuyler and Knight⁶⁵	Computer logs conducted in the United States (n = 1587)	United States	Content analysis was performed on free-text queries submitted to the website of the University of Washington Department of Orthopedics and Sports Medicine’s Ask a Question function during March and June of 2002, which features multimedia information on arthritis, orthopedics, and sports-medicine topics	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	Finding relevant health information and support on the Internet may help people to become more actively involved in making decisions that affect their health
Stavropoulou⁶⁶	Questionnaire conducted in Greece (n = 743)	Greece	Individuals enrolled in the Centre for the Treatment of Hypertension in Hippocration General Hospital of Athens	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	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
Taha et al.⁶⁷	Focus groups and questionnaires conducted in the United States (n = 53)	United States	53 adults ranging in age from 51 to 85 years 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	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	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 information
Thoonen et al.⁶⁸	Feedback instrument (n = 98)	The Netherlands	GPs selected all known asthma patients from their own practice population aged between 16 and 60 years with a need for corticosteroids based on criteria from national guidelines on the treatment of asthma	Studies the effects of patient education, tailored to individual needs of patients as part of an asthma self-management program	Use of this tailored education program improved the GP–patient interaction within the context of a clinically effective asthma self-management program
White and Horvitz⁶⁹	Computer logs conducted in the United States	United States	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 6 months from September 2008 until February 2009 inclusive	Explore the potential for the Web to induce costly and potentially unnecessary engagements with health professionals	Findings have implications for reducing costly and unnecessary healthcare resource utilization through refinements of ranking algorithms and search interfaces
White et al.⁷⁰	Computer logs conducted in the United States	United States	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	How medical domain experts search the Web for information related to their expertise, as compared with nonexperts	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
White and colleagues^18,69	Survey conducted in the United States (n = 515)	United States	Randomly chosen employees within Microsoft’s extended campus in Redmond, Washington	Explore lay peoples’ activities and experiences with using Web search to pursue explanations for symptoms	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
Wilkinson et al.⁷¹	Interview (n = 47)	United Kingdom	South Asian and White European patients over 16 years with a recent (<1 year) diagnosis of diabetes were recruited in Luton, West London, and Leicester	Investigate patients’ experiences upon a diabetes diagnosis	Twenty-one of 47 (45%) reported unmet support and information needs at diagnosis
Xie⁷²	Interview conducted in the United States (n = 20)	United States	Adults 60 years and older	Investigate older adults’ preferences for health information and participation in decision making
Zach et al.⁷³	Interview conducted in England (n = 53)	England	Face-to-face anonymous interviews with patients waiting for appointments at the center	Improve communication between an urban health center and the community it serves	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

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,^{29,36,38,41,43–45,49,53,54,58,59,61,62,64,67,72,75} nutrition,^{36–38,40,45,47,56,61,62,64,67,71,72} and alternative medicines or new/experimental treatment available.^{29,37,38,59,61–64,67} The complete list of information needs is found in Table 2.

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	17	65
Nutrition	12	46
Alternative medicines or experimental treatment	9	35
Prescription/drug	8	31
Exercise and physical activity	8	31
Prognosis	7	27
Treatment	7	27
Information about healthcare providers	7	27
Side effects of drugs/treatment	7	27
Symptoms	5	19
Self-care	5	19
Diagnosis	4	15
Health promotion/lifestyle	4	15
Health insurance and policies, test availability, test results, sexual function/fertility, psychological issues, mental health	2	8
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	1	4

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,^{30–32,37,39,44,45,47,51,53,56,58,59,61,64,66,67,73,75} 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 Parkinson’s 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 Alzheimer’s Association;⁶⁷ and well-known hospitals and established organizations.⁶⁷

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	18	86
Physician	15	71
Television	14	67
Family and friends	13	62
Magazine	12	57
Pharmacist	10	48
Radio	10	48
Newspapers	10	48
Leaflet	9	43
Popular books	8	38
Nurses	5	24
Email or support groups	5	24
Medical books	5	24
Other healthcare professional	4	19
Public library	4	19
Organization	4	19
Medical journals	3	14
Newsletters	3	14
Specialist, others with disease, seminar/course/lecture	2	10
Dietician, Email with a healthcare provider, first aid training	1	5

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 income^37,55,57,61 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 skills.^{30,48,51,67,76–79}

Discussion

We are using Harris and Dewdney’s 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-seeker’s 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 50 percent 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 see^{29,38,56,58,61,64,67,72} 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 physician’s knowledge.^33,51 After consultation, patients also seek information as a second opinion to validate the information provided at consultation^29,33,56,67 and to research alternative medicines or new/experimental treatment available to them.^{29,37,38,59,61–64,67} 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 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.^87–89 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 patient–provider 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 Internet also 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 provider’s visit notes.⁹⁴ Access to patient portals could provide patients with accurate information from their provider’s 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 show that patients reviewing their records positively affected patient–provider 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 patie-nts.^{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 et al.⁷¹ and Longo et al.⁵¹ found that relatives and friends were frequently cited as sources of information, especially in families with a history of diabetes. Patients in Stavropoulou’s⁶⁶ study regarded family and friends as information sources on hypertension and medication for hypertension. Malone et al.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 et al.’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.^{30,59,67,76–79,97,98} Although patients are actively seeking information on their own, a national survey reported that 72 percent 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 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 participant’s ability to accurately and completely recall information. Also, recall using these methods may also introduce social desirability bias.⁹⁹ For example, Hogue et al.⁴⁴ used open-ended 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 et al.,⁷³ Budtz and Witt,³² and Caiata-Zufferey et al.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 et al.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 doctor’s visit, or (3) they do not have a doctor because they have previously been healthy.

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 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 information-seeking 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 physician–patient 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.

Footnotes

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.

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

Abstract

Conclusion:

Keywords

Key points for decision makers

Introduction

Information needs and information sources of patients

Information-seeking models

Information overload

Objective of the study

Method

Search strategy and study selection

Data sources

Inclusion criteria

Exclusion criteria

Data extraction

Results

Characteristics of reviewed studies

Information needs of patients

Information sources of patients

Barriers to information access to the Internet

Discussion

Harris and Dewdney Principle 1: information needs arise from the help-seeker’s situation

Harris and Dewdney Principle 2: the decision to seek help or not seek help is affected by many factors

Harris and Dewdney Principle 3: people tend to seek information that is most accessible

Harris and Dewdney Principle 4: people tend to first seek help or information from interpersonal sources, especially from people like themselves

Principle 5: information seekers expect emotional support

Principle 6: people follow habitual patterns of seeking information

Validity of selected articles’ research methodologies

Limitations of this review

Conclusion

Footnotes

Declaration of Conflicting Interests

Funding

References