Using social media to engage knowledge users in health research priority-setting: a scoping review (Preprint)

Abstract

The need to include individuals with lived experience (i.e., patients, family members, caregivers, researchers, and clinicians) in health research priority-setting is becoming increasingly recognized. Social media-based methods represent one 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.

This review (1) identified social media strategies that enhanced participation in priority-setting research, (2) collated metrics assessing the effectiveness of social media campaigns, and (3) summarized the benefits and limitations of social media-based research approaches, as well as recommendations for prospective campaigns.

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 into related codes and themes.

Twenty-three papers reporting on 22 unique studies were included. These studies utilized Facebook, Twitter, Reddit, websites, video-calling platforms, emails, blogs, e-newsletters, and online forums to engage with key stakeholders of health research. 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; and indirectly assessed as the total number of survey responses and the number of visits to external survey administration sites. To enhance engagement, study authors recommended the use of social media group moderators, opportunities for peer-to-peer interaction, and the establishment of a consistent tone and brand.

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 marginalized groups and addressing these limitations will enhance the inclusion of diverse research priority opinions in future research agendas.