JMIR Publications

ABSTRACT

Background:

The importance of including knowledge users (patients, family caregivers, clinicians, other advocates) in health research priority-setting is becoming increasingly recognized. Social media-based methods represent one means to elicit and prioritize the research interests of knowledge users, but there remains sparse methodological guidance on how best to conduct social media efforts and assess their effectiveness.

Objective:

This scoping review aimed to identify studies that used social media methods to engage knowledge users in research priority-setting. We synthesized associated data to understand how the methods are being used, how method effectiveness is directly and indirectly measured, and benefits, limitations, and recommendations.

Methods:

We searched PubMed, EMBASE, Cochrane Library, Scopus, and Web of Science from database inception until June 2020. Two reviewers screened all titles and abstracts, as well as full-texts. We included all peer-reviewed studies that implemented and evaluated social media strategies aimed at engaging knowledge users in research priority-setting. We conducted a subsequent thematic analysis using NVivo 12 to aggregate study data into related codes and themes.

Results:

A total of 18 papers reporting on 17 unique studies were included. These studies utilized Facebook, Twitter, Reddit, websites, video-calling platforms, emails, blogs, e-newsletters, and online forums to engage with knowledge users. 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. Included studies recommended 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 knowledge user priority-setting participation opportunities leading to the development of research agendas informed by patient, family caregivers, clinicians, and other advocates. Perceived limitations of the approach include underrepresentation of certain groups and addressing these limitations will ensure the inclusion of research priority opinions of a broad knowledge user group.