Currently submitted to: Journal of Medical Internet Research
Date Submitted: Jan 13, 2025
Open Peer Review Period: Jan 14, 2025 - Mar 11, 2025
(currently open for review)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Quality of information and advice about health conditions in peer online support groups: Scoping review of the literature.
ABSTRACT
Background:
The use of health-related peer online support groups to support self-management of health issues has become increasingly popular. The quality of user-generated health information and advice may have important implications for health and for the utility of such groups. There is some evidence of variable quality of online health-related information but the extent to which misinformation is a problem in peer online support groups is unclear.
Objective:
To gain insight into the quality of information and advice about health conditions in peer online support groups and to review the available tools used to quality-assess such information.
Methods:
A scoping review was undertaken following JBI scoping review methodology. Electronic databases (Medline (Ovid), CINAHL, Web of Science and ASSIA, ProQuest Dissertation and Theses, and Google Scholar) were searched for literature published before November 2023, as well as citations of included papers. Primary research studies, reviews, and grey literature that explored the quality of information and advice in peer online support groups were included. Title and abstracts were independently screened by two reviewers. Data was extracted and tabulated, and key findings summarised narratively.
Results:
A total of 14 relevant papers, from 3136 identified, were included. Ten were primary research papers comprising of diverse quality appraisal methodologies, and four were review papers. All had been published between 2014 and 2023. The quality of information and advice in peer online support groups varied according to the health condition in focus and across online platforms. Across the literature, there was more evidence of poor-quality information and misinformation than of good quality information and advice, particularly around long-term and life-threatening conditions. Fellow peer online support group users often played an active role in correcting misinformation through replying to false claims or providing correct information in subsequent posts. Quality appraisal tools were reported as being used by researchers and medical professionals in appraising the quality of information and advice. Such tools included established tools for the appraisal of health-related information (e.g. DISCERN, HONcode criteria, JAMA benchmark criteria). No tools reported were specifically designed to appraise peer online support group content.
Conclusions:
While there is good quality information and advice exchanged between users in peer online support groups, our findings show that misinformation is a problem. Confidence in the quality of information shared may determine the utility of peer online support groups for patients and medical professionals. Our review suggests that clinical and academic experts in health conditions could provide a valuable role in quality-assuring content. Several quality appraisal tools are available to support such an initiative.
Citation
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