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      A comprehensive scoping review to identify standards for the development of health information resources on the internet

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          Abstract

          Background

          Online health information, if evidence-based and unbiased, can improve patients’ and caregivers’ health knowledge and assist them in disease management and health care decision-making.

          Objective

          To identify standards for the development of health information resources on the internet for patients.

          Methods

          We searched in MEDLINE, CINAHL, Scopus, Web of Science, and Google Scholar for publications describing evaluation instruments for websites providing health information. Eligible instruments were identified by three independent reviewers and disagreements resolved by consensus. Items reported were extracted and categorized into seven domains (accuracy, completeness and comprehensiveness, technical elements, design and aesthetics, usability, accessibility, and readability) that were previously thought to be a minimum requirement for websites.

          Results

          One hundred eleven articles met inclusion criteria, reporting 92 evaluation instruments (1609 items). We found 74 unique items that we grouped into the seven domains. For the accuracy domain, one item evaluated information provided in concordance with current guidelines. For completeness and comprehensiveness, 18 items described the disease with respect to various topics such as etiology or therapy, among others. For technical elements, 27 items evaluated disclosure of authorship, sponsorship, affiliation, editorial process, feedback process, privacy, and data protection. For design and aesthetics, 10 items evaluated consistent layout and relevant graphics and images. For usability, 10 items evaluated ease of navigation and functionality of internal search engines. For accessibility, five items evaluated the availability of websites to people with audiovisual disabilities. For readability, three items evaluated conversational writing style and use of a readability tool to determine the reading level of the text.

          Conclusion

          We identified standards for the development of online patient health information. This proposed instrument can serve as a guideline to develop and improve how health information is presented on the internet.

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          Most cited references30

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          Trust and sources of health information: the impact of the Internet and its implications for health care providers: findings from the first Health Information National Trends Survey.

          The context in which patients consume health information has changed dramatically with diffusion of the Internet, advances in telemedicine, and changes in media health coverage. The objective of this study was to provide nationally representative estimates for health-related uses of the Internet, level of trust in health information sources, and preferences for cancer information sources. Data from the Health Information National Trends Survey were used. A total of 6369 persons 18 years or older were studied. The main outcome measures were online health activities, levels of trust, and source preference. Analyses indicated that 63.0% (95% confidence interval [CI], 61.7%-64.3%) of the US adult population in 2003 reported ever going online, with 63.7% (95% CI, 61.7%-65.8%) of the online population having looked for health information for themselves or others at least once in the previous 12 months. Despite newly available communication channels, physicians remained the most highly trusted information source to patients, with 62.4% (95% CI, 60.8%-64.0%) of adults expressing a lot of trust in their physicians. When asked where they preferred going for specific health information, 49.5% (95% CI, 48.1%-50.8%) reported wanting to go to their physicians first. When asked where they actually went, 48.6% (95% CI, 46.1%-51.0%) reported going online first, with only 10.9% (95% CI, 9.5%-12.3%) going to their physicians first. The Health Information National Trends Survey data portray a tectonic shift in the ways in which patients consume health and medical information, with more patients looking for information online before talking with their physicians.
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            Empirical studies assessing the quality of health information for consumers on the world wide web: a systematic review.

            The quality of consumer health information on the World Wide Web is an important issue for medicine, but to date no systematic and comprehensive synthesis of the methods and evidence has been performed. To establish a methodological framework on how quality on the Web is evaluated in practice, to determine the heterogeneity of the results and conclusions, and to compare the methodological rigor of these studies, to determine to what extent the conclusions depend on the methodology used, and to suggest future directions for research. We searched MEDLINE and PREMEDLINE (1966 through September 2001), Science Citation Index (1997 through September 2001), Social Sciences Citation Index (1997 through September 2001), Arts and Humanities Citation Index (1997 through September 2001), LISA (1969 through July 2001), CINAHL (1982 through July 2001), PsychINFO (1988 through September 2001), EMBASE (1988 through June 2001), and SIGLE (1980 through June 2001). We also conducted hand searches, general Internet searches, and a personal bibliographic database search. We included published and unpublished empirical studies in any language in which investigators searched the Web systematically for specific health information, evaluated the quality of Web sites or pages, and reported quantitative results. We screened 7830 citations and retrieved 170 potentially eligible full articles. A total of 79 distinct studies met the inclusion criteria, evaluating 5941 health Web sites and 1329 Web pages, and reporting 408 evaluation results for 86 different quality criteria. Two reviewers independently extracted study characteristics, medical domains, search strategies used, methods and criteria of quality assessment, results (percentage of sites or pages rated as inadequate pertaining to a quality criterion), and quality and rigor of study methods and reporting. Most frequently used quality criteria used include accuracy, completeness, readability, design, disclosures, and references provided. Fifty-five studies (70%) concluded that quality is a problem on the Web, 17 (22%) remained neutral, and 7 studies (9%) came to a positive conclusion. Positive studies scored significantly lower in search (P =.02) and evaluation (P =.04) methods. Due to differences in study methods and rigor, quality criteria, study population, and topic chosen, study results and conclusions on health-related Web sites vary widely. Operational definitions of quality criteria are needed.
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              A computer readability formula designed for machine scoring.

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                Author and article information

                Contributors
                Role: ConceptualizationRole: Data curationRole: Formal analysisRole: MethodologyRole: Writing – original draftRole: Writing – review & editing
                Role: Data curationRole: Formal analysisRole: Writing – original draft
                Role: Data curationRole: Writing – review & editing
                Role: Data curationRole: Writing – review & editing
                Role: ConceptualizationRole: MethodologyRole: Project administrationRole: ResourcesRole: SupervisionRole: Writing – review & editing
                Role: ConceptualizationRole: MethodologyRole: Project administrationRole: ResourcesRole: SupervisionRole: ValidationRole: Writing – review & editing
                Role: Editor
                Journal
                PLoS One
                PLoS ONE
                plos
                plosone
                PLoS ONE
                Public Library of Science (San Francisco, CA USA )
                1932-6203
                20 June 2019
                2019
                : 14
                : 6
                : e0218342
                Affiliations
                [1 ] Section of Rheumatology and Clinical Immunology, Department of General Internal Medicine, The University of Texas MD Anderson Cancer Center, Houston, Texas, United States of America
                [2 ] Rheumatology and Rehabilitation Department, Faculty of Medicine, Assiut University Hospitals, Assiut, Egypt
                King Abdulaziz University, SAUDI ARABIA
                Author notes

                Competing Interests: The authors have declared that no competing interests exist.

                Article
                PONE-D-19-05366
                10.1371/journal.pone.0218342
                6586310
                31220126
                a4cbf39f-8866-4f4c-a33d-4fa173bc962b
                © 2019 Abdel-Wahab et al

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                History
                : 22 February 2019
                : 30 May 2019
                Page count
                Figures: 0, Tables: 3, Pages: 16
                Funding
                The authors disclose receipt of the following financial support for the research, authorship, and/or publication of this article: Dr. Suarez-Almazor received a Disease Targeted Innovative Research Grant from the Rheumatology Research Foundation. The funding agency had no role in the study’s design, conduct, and reporting. Dr. Lopez-Olivo received an Investigator Award from the Rheumatology Research Foundation.
                Categories
                Research Article
                Computer and Information Sciences
                Computer Networks
                Internet
                Biology and Life Sciences
                Neuroscience
                Cognitive Science
                Cognitive Psychology
                Language
                Biology and Life Sciences
                Psychology
                Cognitive Psychology
                Language
                Social Sciences
                Psychology
                Cognitive Psychology
                Language
                Social Sciences
                Linguistics
                Semantics
                Research and Analysis Methods
                Database and Informatics Methods
                Database Searching
                Social Sciences
                Sociology
                Culture
                Medicine and Health Sciences
                Health Care
                Health Care Policy
                Screening Guidelines
                Computer and Information Sciences
                Information Technology
                Data Processing
                Research and Analysis Methods
                Database and Informatics Methods
                Information Retrieval
                Custom metadata
                All relevant data are within the manuscript and its Supporting Information files.

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