In recent years, there has been a rapid increase in people’s use of web-based resources aimed at meeting their health information needs [1,2]. Seeking health information and advice from the internet has been described as the interaction of an individual (eg, patient, caregiver, or professional) with or through an electronic device or communication technology to access or to transmit health information [3]. A large amount of web-based health information is generated by health care providers; pharmaceutical companies; and other public, private, and charitable health organizations by virtue of websites for the public. At the same time, an increasing volume of web-based health content is being generated by individuals living with or caring for others with a health condition, via online peer support groups [4-10].

Online peer support groups, otherwise named online support communities, are virtual spaces where individuals exchange health-related information (ie, factual knowledge that is not based on a person’s opinion); advice (ie, a recommendation for action based on someone’s experience); and peer support (ie, sharing personal experiences and emotional, social, or practical support with one another) often through asynchronous, text-based computer-mediated communication platforms (eg, discussion forums and social media sites) [4,10,11]. Exchanging health-related information and advice in online peer support groups has been found to empower people living with or caring for others with health conditions in learning new methods for managing their conditions, in feeling that their experiences are validated, in reducing a sense of loneliness, and in improving their navigation of health care services [7-9,12-14]. Online peer support groups have been described as a health care resource that is complementary to formal health care, with patients feeling as equal contributors in the patient–health care provider relationship [10]. Interactions through online peer support groups about health can also lead to the identification of health-related problems that health care professionals have not yet considered, and sharing health-related experiences through such groups has led to campaigns to improve health care [15].

While online peer support groups have become increasingly popular, there is growing concern from health care professionals and researchers regarding the accuracy and safety of some health information on the internet [16-19]. The concept of information quality has multiple dimensions, centered on trustworthiness and scientific correctness [20]. Increasing attention has been given to exploring the quality of health-related information and advice exchanged in online peer support groups, particularly around the medical accuracy of content or, conversely, the spread of misinformation [21-23]. Health-related misinformation has been defined as a health-related claim of a fact that is false due to a lack of scientific evidence [24] and is usually attributed to misconceptions. Exposure to misinformation in online peer support groups and following false information and advice can detrimentally impact health outcomes [25-31]. Several incidents of public health concerns arose out of misinformation spreading across social web-based platforms during the COVID-19 pandemic, including hospitalization and casualties [32]. Poor quality information often reproduces within discussion threads in online peer support groups, where like-minded people come together and similar topics circulate (the “echo chamber effect”) [30]. People with lower levels of health literacy may be particularly vulnerable to the detrimental impacts of misinformation [29,31].

With the rapid spread of misinformation in online peer support groups posing significant threats to public health, a comprehensive scoping review of the quality of information and advice and the methods used in quality appraisals is needed. Knowledge about the quality of information shared in online peer support groups is directly relevant for patients, carers, and health care professionals in supporting the management of health conditions. In addition, an understanding of the quality appraisal methods is important, as they serve as potential moderators of the quality of information and advice provided.

The objective of this scoping review was to map and summarize evidence about the quality of information and advice in online peer support groups across a range of health conditions and to review the available tools used to assess the quality of such information and advice.

The following were our research questions (RQs):

Scoping reviews aim to identify and map the key concepts within a research area regarding its nature, features, and volume. Such reviews often address a broad RQ and include a variety of study designs [33,34]. This scoping review was conducted in accordance with the Joanna Briggs Institute methodology for scoping reviews [35-37] and followed the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) checklist for reporting [38]. The review protocol was registered in January 2024 on the Open Science Framework Registries [39]. The PCC (Population, Concept, and Context) framework [37] was followed as a guide to construct the review objectives, search strategy, and eligibility criteria. Covidence systematic review software was used for all review stages [40].

The principal reviewer (BMT) and second reviewer (EP) developed the search strategy, with assistance from a university research librarian. The search strategy aimed to identify published and unpublished literature and focused on three central concepts: (1) online support groups, (2) quality assessment, and (3) health-related information and advice. An initial limited search was conducted in the Web of Science and MEDLINE (Ovid) databases to identify the literature on this topic and keywords referring to the 3 central concepts of the search strategy (Textbox 1). Records identified through this initial search were reviewed to identify relevant literature, and text words contained in the titles, abstracts, and keywords of relevant literature were used to identify additional keywords to develop the final search strategy (Multimedia Appendix 1). An adapted search strategy was developed for each database.

We searched electronic databases (MEDLINE [Ovid], CINAHL, Web of Science, and Applied Social Sciences Index and Abstracts) and sources of unpublished and gray literature (Google Scholar and ProQuest Dissertations and Theses) from inception to November 2023. Google Scholar collates results from across the internet and does not have internal functions for an advanced search as do the other included databases. Previous research indicated that most gray literature begins to appear after approximately 20 to 30 pages in Google Scholar results; therefore, the first 100 results from page 20 onward were screened [41]. The reference lists of included review articles and citations of all included articles were hand-searched for additional relevant literature. Where full texts were not available, authors were contacted to request a copy.

Inclusion and exclusion criteria reflected the focus of this scoping review on the quality of information and advice about health conditions in online peer support groups (Textbox 2).

All identified citations were collated and uploaded into the review software, and duplicates were removed. Two independent reviewers (BMT and EP) screened titles and abstracts against the inclusion criteria. In cases where the abstract signaled potential eligibility, the full article was retrieved and imported into Covidence, read, and assessed for inclusion. Reasons for exclusion of articles were recorded as full text. Any disagreements at each stage of the selection process were resolved through discussion.

Data were extracted by BMT using a data extraction tool developed by the wider review team (BMT, NSC, JLC, JL, and EP). The data extraction tool included predetermined study characteristics (ie, authors, year, country, research design methodology, and literature aims), conditions in focus of an online peer support group, key findings, details of quality assessment tools, and study limitations. After extracting data from each included article, BMT sent completed data extraction to a second reviewer (EP) for consensus. The extracted study characteristics were discussed before agreeing on the final extracted content to be analyzed and synthesized.

Data extracted from included literature were tabulated and summarized narratively. Given the diversity and heterogeneity of the literature concerning methodologies and findings, a narrative summary of findings was chosen to provide a comprehensive understanding of the literature. BMT uploaded the full texts of included articles into NVivo (Lumivero) qualitative data analysis software [42] and coded their content according to the 3 RQs of this scoping review. Codes were analyzed descriptively and discussed with additional reviewers (EP and NSC). Final summaries of each RQ were developed with the wider review team (BMT, NSC, JLC, JL, and EP).

The search strategy yielded 3136 results, of which 238 (7.59%) were duplicates. From the 2898 titles and abstracts reviewed, 2848 (98.27%) did not meet the inclusion criteria. The full texts of the remaining 50 (n=2898, 1.72%) articles were assessed, and a further 36 (72%) were excluded as they did not meet the inclusion criteria (n=35, 70%) or were not attainable after contacting the author (n=1, 2%). Overall, there were 14 (28%) articles included in our review. Figure 1 presents a PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) [43] flow diagram detailing the inclusion process.

Of the 14 included articles, 11 (79%) had been published since 2020. In total, 10 (71%) were primary research articles that reported a quality appraisal of information and advice about health conditions in online peer support groups and 4 (29%) were review articles. A total of 6 (43%) articles were published in the United States; 4 (29%) articles were published in the United Kingdom; and the remaining 4 (29%) articles were published in Ghana, Norway, Spain, and Korea. The included articles focused on a variety of health conditions, which sometimes fell into more than one category, including long-term conditions (n=14, 100%), acute conditions (n=7, 50%), physical health conditions (n=13, 93%), mental health conditions (n=3, 21%), and viral infections (n=6, 43%). Several web-based platforms were explored, including Facebook (n=8, 57%), X (formerly known as Twitter; n=7, 50%), and Reddit (n=6, 43%). Table 1 provides further details about the included articles.

The objective of this scoping review was to gain insight into the quality of information and advice in online peer support groups about a range of health conditions, and to review the available tools used to quality-assess such information and advice. This scoping review has identified that the quality of information and advice in online peer support groups varies according to the condition and to the degree of health care expert moderation present. While there was some evidence of good quality information and advice being exchanged [50,54-56], there was more evidence of misinformation and of low-quality information and advice, particularly around long-term and life-threatening conditions [44,45,49,51], which is also consistent with the wider literature [63,64]. There were varying degrees of misinformation about non–life-threatening conditions [48,50,55,57], viral infections [47,51,53,54,56], and mental health conditions [51,52]. In the event of a public health concern where there is uncertainty about the disease, obtaining accurate information can be extremely difficult [54].

Among platforms hosting health-related online peer support groups, Facebook presents the most misinformation about noncommunicable diseases and treatments, which may be due to there being more space in posts to describe experiences with disease symptoms and treatments [51]. X, on the other hand, appears to exhibit more misinformation about vaccines and drugs [51,52], which may be because of the natural dynamism of the platform that facilitates an ideal medium for discussions around different political or ideological perspectives [51]. In addition, the use of algorithms by web-based platforms such as Facebook and X that place content on users’ feeds that match their web-based search–related behaviors and engagement with other posts may also indicate that those whose beliefs align with misinformation are more likely to retransmit such content [23]. Effortless architecture constructed by web-based platforms, such as the one-touch forward option on WhatsApp that enables users to forward messages simultaneously to multiple users, may also explain the prevalence of misinformation on the web [65].

Platforms such as Facebook and X do not typically monitor misinformation, which may be detrimental for the continued spread of misinformation about various health conditions on such platforms. However, in the event of a public health concern such as during the COVID-19 pandemic, platforms including Facebook, X, Reddit, Instagram, and WhatsApp introduced measures to mitigate misinformation, such as placing warning labels on content about the pandemic, removing content, and banning accounts [66]. This suggests that such interventions are possible, although they are not rolled out routinely and thus may not be prioritized by platforms. The extent of the problem of misinformation in online peer support groups can alternatively be reduced by attempts from fellow online peer support group users in addressing and correcting misinformation [45,53,56]. Current moderation solutions for misinformation rely heavily on reporting mechanisms and human-led moderation, though post-by-post moderation based on individual users has been described as unsustainable [21]. Organized public health campaigns composed of factual, evidence-based messages distributed in the online world could also tackle the problem of misinformation [51-53]. Digital literacy–focused interventions that aim to teach people strategies to recognize misinformation have demonstrated effective outcomes, as well as interventions where platforms make content classed as misinformation less visible and deincentivize the creation and sharing of such content [21].

Studies have typically involved researchers, clinical academics, and specialist clinicians who hold expertise in specific conditions to conduct quality appraisals of information and advice in online peer support groups [48-50,54-57]. This has been undertaken through comparing information and advice with evidence-based guidelines [44,48-50], scientific journal articles [50], and information provided on trusted third sector websites [49]. Quality appraisal instruments including the DISCERN instrument [58], the HONcode criteria [59,60] and the JAMA benchmark [61] have been used as a recording tool for appraising the quality of information and advice exchanged around a variety of conditions and disciplines [45], despite not being designed specifically for the online social world. While criteria for forming such tools were not instinctively developed for online peer support group content, the DISCERN instrument, in particular, has been described as being suitable to evaluate any text-based health-related information (pertaining to treatment) [17]. At present, the DISCERN instrument remains in use with more than 150 published studies having reported use of the tool in evaluating health information [17], and it is recognized as a reliable tool used by both health care professionals and patient users [67]. In this review, specific quality indicators for appraising information and advice have been outlined, of which many mirror criteria forming the quality appraisal instruments discussed in this review, such as relevance [45,54,55], sources of evidence [45,51], currency [45,55], accuracy [44,51,55,56], coherence [55,56], and the usefulness of content [51,56]. Research undertaken since conducting this review also highlights accuracy, credibility, and reliability as key quality indicators for appraising information and advice in online peer support groups [67]. This suggests that the DISCERN instrument [58], the HONcode criteria [59,60], and the JAMA benchmark [61] could be appropriate quality appraisal tools for academics and health care professionals to use as a guide for appraising the quality of information and advice in online peer support groups. On occasions, these tools have been combined to assess information and advice in online peer support groups; thus, there may also be a need for novel instruments that focus solely on online support group content that would consider the nature and architecture of such content [45]. Others academics have argued that because these tools were created to be applied across different health-related domains and are therefore called “general instruments,” they may be more appropriate to evaluate factors associated with the formality of content or the design of websites rather than to evaluate the substance of content (eg, its accuracy and completeness), which may be better evaluated by domain-specific instruments that are created by researchers for individual research and are based on medical guidelines, literature, and their expertise [68].

This is the first comprehensive scoping review considering the findings of a diverse and heterogeneous pool of literature and exploring the quality of information and advice in online peer support groups about various health conditions. This scoping review was conducted in accordance with the Joanna Briggs Institute methodology [35-37]. In doing so, this scoping review has successfully identified and mapped current key concepts around the quality of information and advice about various health conditions in online peer support groups, taking a broad, inclusive approach to evidence and accommodating the literature comprising a range of diverse questions and study designs.

There are also some limitations that should be considered. First, although 6 databases were searched, it is possible that some relevant studies were not identified. Second, although the search strategy was developed with the support of a specialist librarian, there are additional search terms that could have been used, such as “chat rooms” and “computer-mediated support” [69], which were excluded from the search strategy as they yielded a considerable amount of irrelevant literature. Not including these terms may have meant that some relevant literature may have been missed. However, to alleviate these potential limitations, Google Scholar was also searched, as well as the reference lists of all the included studies. This yielded additional studies that were included in our review. Third, articles focusing only on information and advice about health conditions on video-based social media sites were excluded from this review, as this paper focused on rich written information and advice generated in online communities dedicated to peer-to-peer support, rather than including comments on videos. Therefore, it is possible that some additional data were missed from comments sections on videos. Future research could compare the quality of health-related information and advice provided on web-based video platforms to traditional online peer support groups. Finally, the second part of the objective of this review was to review the available tools used to assess the quality of information and advice in online peer support groups. While this scoping review identified and mapped the available information about such tools, the articles themselves did not provide a substantive amount of information about quality appraisal tools, which limited the extent to which it was possible to review them based the included articles in this review. Wider literature has been drawn on in the discussion of this paper.

Where patients seek information and advice in the web-based world is a matter that requires more attention and improved conversations in consultations between health care professionals and patients [44,50,51]. Health care professionals need to meticulously attend to supporting people with lower levels of health literacy [29,31] and older people who may be particularly vulnerable to experiencing confusion and anxiety generated by coming across misinformation [70,71]. To do this, health care professionals need to be better informed about what online peer support groups are, how they operate, and the benefits and harms that they can offer patients. There is a need for health care professionals to be more aware of content discussed in online peer support groups [48,52-55,58] and, furthermore, to take an active role in correcting misinformation [44,45,47,48,51]. This activity is a current gap in provision and could be recommended for future career opportunities for health care professionals who may be seeking alternative roles to traditional clinical work, in meeting the health information and support needs of the public. In addition, there may be an opportunity for health care professionals in training to complete a quality appraisal task of health information available on the web and possibly to provide advice (within their field of competence) in online peer support groups. While some degree of moderation of information and advice in online peer support groups has been proven to be helpful in correcting misinformation, the extent to which health care professionals could or should be involved in moderating content as part of their duty of care was not explored in the included articles in this review. Future research is needed to determine the acceptability of and potential methods for health care professionals moderating and contributing content in online peer support groups, from the perspectives of health care professionals and patient users of online peer support groups. In addition, the type of health care professional who would be most effective in assessing the quality of content in online peer support groups, which may include general practitioners, nurses, secondary care clinicians, or others, needs to be further explored. Moreover, future research could explore the resources used in time, training, and financing around asking health care professionals to quality appraise information and advice in online peer support groups to better understand how feasible incorporating such a task would be alongside traditional clinical duties. Future research is needed to further assess the acceptability and usability of common quality appraisal tools used in appraising information and advice in online peer support groups, such as DISCERN instrument [58], the HONcode criteria [59,60], and the JAMA benchmark [61], for health care professionals to use them as a guide in such practice. There is a need for a novel instrument tailored specifically to appraise health-related information in online peer support groups, incorporating items focusing on reliability, credibility, accuracy, currency, coherence, and usefulness as the basis of the tool.

There is increasing concern regarding the quality of information and advice about health conditions exchanged in online peer support groups. While there is good quality information and advice exchanged between users, misinformation is also a problem, with some users being ill-advised about common long-term and life-threatening conditions, viral infections, and mental health conditions. The extent of the problem of misinformation can be reduced with fellow users in online peer support groups addressing and correcting misinformation and through public health campaigns organized in the online world. Health care professionals and patients need to discuss the use of online peer support groups more regularly in consultations. Furthermore, there is a need for health care professionals to play a more active role in quality-assuring health-related information and advice in online peer support groups. This could be facilitated using established quality appraisal tools such as the DISCERN instrument, the HONcode criteria, and the JAMA benchmark as a guide in appraising content. Future research is needed focusing on approaches to educating health care professionals around the benefits and harms that online peer support groups can offer patients, along with investigating the acceptability of and potential methods for health care professionals moderating and contributing content in online peer support groups.