Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review

Abstract

Background The need to include individuals with lived experience (ie, patients, family members, caregivers, researchers, and clinicians) in health research priority setting is becoming increasingly recognized. Social media–based methods represent a means to elicit and prioritize the research interests of such individuals, but there remains sparse methodological guidance on how best to conduct these social media efforts and assess their effectiveness. Objective This review aims to identify social media strategies that enhance participation in priority-setting research, collate metrics assessing the effectiveness of social media campaigns, and summarize the benefits and limitations of social media–based research approaches, as well as recommendations for prospective campaigns. Methods We searched PubMed, Embase, Cochrane Library, Scopus, and Web of Science from database inception until September 2021. Two reviewers independently screened all titles and abstracts, as well as full texts for studies that implemented and evaluated social media strategies aimed at engaging knowledge users in research priority setting. We subsequently conducted a thematic analysis to aggregate study data by related codes and themes. Results A total of 23 papers reporting on 22 unique studies were included. These studies used Facebook, Twitter, Reddit, websites, video-calling platforms, emails, blogs, e-newsletters, and web-based forums to engage with health research stakeholders. Priority-setting engagement strategies included paid platform–based advertisements, email-embedded survey links, and question-and-answer forums. Dissemination techniques for priority-setting surveys included snowball sampling and the circulation of participation opportunities via internal members’ and external organizations’ social media platforms. Social media campaign effectiveness was directly assessed as number of clicks and impressions on posts, frequency of viewed posts, volume of comments and replies, number of times individuals searched for a campaign page, and number of times a hashtag was used. Campaign effectiveness was indirectly assessed as numbers of priority-setting survey responses and visits to external survey administration sites. Recommendations to enhance engagement included the use of social media group moderators, opportunities for peer-to-peer interaction, and the establishment of a consistent tone and brand. Conclusions Social media may increase the speed and reach of priority-setting participation opportunities leading to the development of research agendas informed by patients, family caregivers, clinicians, and researchers. Perceived limitations of the approach include underrepresentation of certain demographic groups and addressing such limitations will enhance the inclusion of diverse research priority opinions in future research agendas.

Users' passivity in accessing digested scientific evidence through social media: cross-sectional insights

“…Social media strategies' effectiveness has been assessed by the number of clicks/impressions on posts, frequency of viewed posts, volume of comments, and replies [28], validating the choice of the used metrics, despite their possible limitations discussed above. These metrics seem more "natural" since users did not acknowledge they were being assessed, minimizing possible "forced" behaviours.…”

Exploring the use of social media and online methods to engage knowledge users in creating research agendas: Lessons from a pediatric cancer research priority-setting partnership

“…Prior to launching our social media campaign, a scoping review was conducted to describe (1) the existing literature on social media-based strategies used to enhance knowledge user participation in health research priority setting, (2) the recommendations for social media-based research priority-setting campaigns, (3) the benefits and limitations of the method, and (4) the recommendations for future campaigns (7). We identified a total of 23 papers reporting on 22 unique studies.…”

“…We also collaborated with relevant organizations to promote our social media campaign. This strategy is embedded in the James Lind Alliance methodology and was a key factor for success in research priority-setting as identified in our previous scoping review (7). In health research, there are challenges associated with approaching members of the general public due to the inherent power dynamic that exists with healthcare providers (21).…”

“…Social media-based methods have also been increasingly used to enable the engagement of individuals with lived healthcare experiences (i.e., patients, family members, clinicians, and other advocates) in setting research priority agendas (7). Historically, such agendas have been set with little reference to, or input from, those with lived experience-limiting the capacity to effectively translate research findings into practice and policy (8,9.10).…”

“…While social media is more routinely leveraged to engage knowledge users in research priority-setting, there remains sparse explicit descriptions of the methodology and how best to implement it to effectively build knowledge user-led research agendas (7). Here we review a specific case study where social media and other online modalities were leveraged to engage Canadians within the pediatric cancer community in a research priority-setting exercise.…”