Quality and Misinformation About Health Conditions in Online Peer Support Groups: Scoping Review

Abstract

Background: The use of health-related online peer support groups to support self-management of health issues has become increasingly popular. The quality of information and advice may have important implications for public health and for the utility of such groups. There is some evidence of variable quality of web-based health information, but the extent to which misinformation is a problem in online peer support groups is unclear.

Objective: We aimed to gain insight into the quality of information and advice about health conditions in online peer support groups and to review the tools available for assessing the quality of such information.

Methods: A scoping review was undertaken following the Joanna Briggs Institute scoping review methodology. We searched electronic databases (MEDLINE [Ovid], CINAHL, Web of Science, ASSIA, ProQuest Dissertation and Theses, and Google Scholar) for literature published before November 2023, as well as citations of included articles. Primary research studies, reviews, and gray literature that explored the quality of information and advice in online peer support groups were included. Title and abstracts were independently screened by 2 reviewers. Data were extracted and tabulated, and key findings were summarized narratively.

Results: A total of 14 (0.45%) relevant articles, from 3136 articles identified, were included. Of these, 10 (71%) were primary research articles comprising diverse quality appraisal methodologies, and 4 (29%) were review articles. All articles had been published between 2014 and 2023. 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. There were varying degrees of misinformation about non-life-threatening conditions and about mental health conditions. Misinformation about noncommunicable diseases was reported as particularly prevalent on Facebook. Fellow online peer support group users often played an active role in correcting misinformation by replying to false claims or providing correct information in subsequent posts. Quality appraisal tools were reported as being used by researchers and health care professionals in appraising the quality of information and advice, including established tools for the appraisal of health-related information (eg, DISCERN, HONcode criteria, and Journal of the American Medical Association benchmark criteria). No tools reported were specifically designed to appraise online peer support group content.

Conclusions: While there is good quality information and advice exchanged between users in online peer support groups, our findings show that misinformation is a problem, which is a matter of public health concern. Confidence in the quality of information shared may determine the utility of online peer support groups for patients and health care professionals. Our review suggests that clinical and academic experts in health conditions could play a valuable role in ensuring the quality of content. Several quality appraisal tools are available to support such an initiative.

Keywords: PRISMA; advice; approval; assessment; forum; health; information; online; online support group; peer; quality.

Figure 1

PRISMA flow diagram detailing the inclusion process for this scoping review on the quality of information and advice about health conditions in online peer support groups.