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

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.


Background
The need to meaningfully engage individuals with lived experience (ie, patients, family members, caregivers, clinicians, researchers, and other advocates; henceforth referred to as knowledge users) in the conduct of health research-defined as research that includes clinical and basic medical sciences, such as care-based research, systems research, and preventative research-is being increasingly recognized by the scientific community. In particular, it is recognized that these individuals should be included at the onset of the research process, with the aim of developing research that meets the needs of individuals with lived experiences [1]. In fact, the lack of involvement of these individuals in such research priority setting has been identified as a key contributor to difficulties in effectively translating research findings into clinical practice and policy [2].
In parallel, the use of social media-defined as any web-based platform or mobile app through which users can engage with others-is gaining considerable traction within the research community, as researchers increasingly access Facebook, Twitter, and YouTube to support participant recruitment and other research activities [3]. The benefits of research-related social media use include enhanced connectivity between researchers and participants and the potential for rapid diffusion of scientific knowledge to target audiences [4]. The nature of web-based survey methods may also enhance anonymity for participants within the research process, potentially promoting the collection of more valid data [5]. Particularly, data collected via the web may be less vulnerable to contextual biases that can arise in focus group settings or when researchers administer surveys in-person [5].
In light of such potential benefits, a growing body of literature describing the use of social media to elicit and prioritize research uncertainties from knowledge users is emerging [6]. However, there remains sparse methodological guidance on how best to conduct social media efforts and their corresponding effectiveness in developing knowledge user-built research agendas [7].

Objective and Research Questions
Through this knowledge user-driven scoping review, we aim to identify studies that implemented and evaluated social media campaigns that promote participation in setting priorities for health research to address three overarching research questions: 1. What social media-based strategies have been used to enhance knowledge user participation in health research priority setting? 2. What metrics (direct and indirect) have been used to assess the effectiveness of these social media campaigns in securing knowledge user participation? 3. From the perspectives of those conducting social media-based research priority-setting campaigns, what are the benefits and limitations of the method, as well as recommendations for future campaigns?

Overview
An internal protocol was developed for this review. Our reporting process was conducted in accordance with the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews) guidelines [8].

Search Strategy and Selection of Studies
A comprehensive search strategy was developed in consultation with a tertiary hospital librarian (LR). We conducted tailored searches in PubMed, Embase, Cochrane Library, Scopus, and Web of Science. We searched all databases from their inception to September 14, 2021. Multimedia Appendix 1 shows the search strategy. Intradatabase and interdatabase duplicates were removed electronically. Using Covidence (Veritas Health Innovation), titles and abstracts were screened independently by 2 trained authors (KH and SS) according to our eligibility criteria. In cases of conflicting opinions on eligibility, studies were moved to full-text screening. Full-text articles were then screened independently by 2 authors (KH and SS). Any eligibility disagreements were resolved by consensus through discussion by at least three authors (AC, KH, SS, and LJ). The reference lists of relevant studies were also scanned to find other applicable papers.

Selection Criteria
We included studies (1) that discussed strategies to promote social media-based health research priority setting among key stakeholders and knowledge users and (2) measured the effectiveness of such strategies directly or indirectly. There were no restrictions on the language, country, and year of publication, nor the research content focus, as priority-setting research is cross-disciplinary. Although no explicit restrictions were placed on the language, the included studies were dominated by English language-based social media campaigns. We defined social media as any web-based platform or mobile app through which users can interact and engage with others. We defined knowledge users as patients (or potential patients), caregivers, clinicians, and other advocates (eg, health researchers). We excluded (1) studies where the purpose of the social media campaign did not include knowledge user engagement (eg, social campaigns used to disseminate smoking cessation information to knowledge users) [9]; (2) studies where the research prioritization campaign did not involve social media (dissemination techniques solely involved telephone calls, flyer distribution, etc); and (3) abstracts, dissertations, protocols, systematic reviews, scoping reviews, or case studies.

Data Extraction and Management
A standard electronic data collection form was created and piloted with our group, after which data extraction occurred independently (KH and SS). Discrepancies between the collected data were resolved through discussion with 3 authors (LJ, SS, and KH).

Data Analyses
We used descriptive statistics to summarize quantitative study data and an inductive thematic analysis to synthesize qualitative data [10]. Our data collection form was uploaded to NVivo (version 12.6.0; QSR International) for analysis and was read through multiple times by 2 authors (KH and SS) who had previous experience with thematic analyses. One author (SS) then coded qualitative text within the table on a segment-by-segment basis. At frequent meetings, a second author (KH) reviewed the coding decisions using a constant comparative approach adapted from Thorne [11]. As a group, we (KH, SS, and LJ) then collapsed these codes into subthemes and themes based on the between-code relationships and in accordance with our research questions.

Results
Overview Figure 1 outlines our study identification process. Overall, 23 papers reporting on 22 unique studies were included in this review. The number of published studies increased steadily over time until 2020, which was the last complete publication year ( Figure 2 Table 2 shows the particular social media strategies used to enhance knowledge user engagement in research priority-setting exercises grouped by platform. Of studies using email as their primary social media platform [12,16,17,19,23,24,27,29,30,33] study teams emailed messages with embedded research prioritization survey links (including to researchers' existing mailing lists) and integrated tell a friend tool in emails to prompt recipients to invite colleagues to participate. Facebook-specific methods to engage stakeholders included embedding survey links within Facebook posts, using the platform's boosting feature (ie, paid advertisements), and hiring a Facebook advertising specialist. Informational Facebook pages were also used and involved private and public question-and-answer pages and a resource center with links to relevant documents [5,17,[14][15][16][17][18].

Research Question 1: Social Media-Based Strategies Used
Twitter-specific methods to engage participation included the use of hashtags within tweets and question-and-answer threads for prospective participants [5,14,15,[17][18][19]25,31]. In addition, Salmi et al [27], hosted live chats on Twitter, in which host Twitter accounts tweet about predefined topics with questions during a set period, to which Twitter users respond via tweets and engage in discussions with each other. A web-based forum strategy led to the creation of a space where families and researchers could share ideas on the priority-setting research project [31]. Informational videos were created and hosted on YouTube for people potentially interested in contributing research priorities and were later posted on other platforms [28,29]. For studies involving blogs, researchers posted stories and internal updates related to the project to enhance interest in participation [28,29]. Studies also distributed e-newsletters to existing networks, sending them monthly to promote participation [16][17][18]28,30]. In addition, several studies used posts on Reddit and websites and web-based connection with the research team through video-calling platforms (eg, Skype, WhatsApp, or FaceTime or video chat on Facebook Messenger) to promote participation in priority-setting research [22,28,32]. Table 3 summarizes techniques to disseminate actual web-based research priority-setting surveys through social media. Snowball recruitment, in which current participants' friends and family were approached for participation, was used [14,15,29,30]. Study teams also provided partner organizations with toolkits, templates, and promotional materials [5,12,13,15,17,23,29]. Then, organizations could use these materials to support the broadcasting of participation opportunities through social media. Individuals embedded in research prioritization exercises, such as steering group members, were additionally asked to promote the participation opportunity to their networks via social media [12][13][14][15][16]19,23,30], including by providing such individuals with preworded statements to tweet [19].  [30], and AF b and LFA c patient and Wojcieszek et al [33] family members and posted on their respective social media sites. The ranking survey was emailed to the Cure JM, AF, and LFA listservs and a link was posted on their respective social media sites." Shields et al [29] Using a tell a friend tool, which invites friends and colleagues to participate (peer-to-peer messaging) in the priority-setting research project  [21], and Wojcieszek et al [33] participants and, on subsequent Tuesdays between 10:00 AM and 12:00 PM EST, sent 5 weekly reminders to those who had not yet responded." Kriss et al [21] and Wojcieszek et al [33] Sending email reminders to individuals who began the survey but only partially completed it Reminders to finish survey • "Reminder emails were sent to non-responders and to individuals who began the survey but only partially completed it." • "To encourage engagement and re-engagement, the site moderator used online question and answer threads to keep promoting new discussion topics and emailed a weekly topic to all the registered users to encourage them to come back."

Facebook
Using and moderating a web-based question-and-answer thread on Facebook to promote discussion topics regarding research participation

Question and answer
Studies providing evidence Representative quotes Strategy description Social media platform and specific strategy Shields et al [29] • "'Resource Centre' page with access to links, documents and reports to help participants deepen their knowledge of the technical health challenges in the region." Creating a resource center with links to documents and reports on the Facebook page

Resource center
Shalhub et al [28] and Sinclair et al [31] • "Announcement of the vEDS Collaborative survey was disseminated via vEDS public and private social media pages" Creating private Facebook groups to allow private discussion among participants in the priority-setting research project Private and secret groups

Newsletter
Han et al [18], Eberman et al [16], and Siefried et al [30] • "To increase our reach and the likelihood of participation, the NATA g marketing team distributed our recruitment announcement and link to volunteers via the ''Range of Motion'' newsletter to all registered attendees 5 and 6 weeks before the conference." Distributing newsletter to an existing network to promote participation in the priority-setting research project Distribution through the researcher's existing network Han et al [18] and Han et al [17] • "Social media promotion through Facebook and Twitter and monthly electronic newsletters from DiabetesSisters." Sending monthly newsletters to promote participation in the priority-setting research project

Frequent promotion
Russell et al [26] • "Moderated online group where families and researchers can share ideas related to research." Creating forums through which families and researchers could share their ideas related to the priority-setting research project Idea sharing Web-based forums Shalhub et al [28] • "Announcement of the vEDS Collaborative survey was disseminated via vEDS public and private social media pages." The use of Reddit as a social media platform used to promote participation in the priority-setting research project Posting of promotional material

Rowbotham et al [25]
• "A bespoke Twitter account was set up @ques-tionCF with the associated hashtag #questionCF. This was managed by members of the steering group and aimed to promote the online surveys and increase participation." Using Twitter hashtags to attract participants and generate conversation among relevant stakeholders Hashtags Rowbotham et al [25] "A bespoke Twitter account was set up @questionCF with the associated hashtag #ques-tionCF. This was managed by members of the steering group and aimed to promote the online surveys and increase participation." Creating a post for inviting participants to ask questions about the priority-setting research project, which was moderated by steering group members Question and answer Studies providing evidence Representative quotes Strategy description Social media platform and specific strategy Salmi et al [27] • "The tweet chat hosts (@BTSMchat and @HPMchat, respectively) tweeted the 4 predefined topics (Table 1)   "Those approached to complete the survey were identified using membership lists of the African Palliative Care Association (APCA)." network to promote the survey Dyson et al, [14], Eberman et al [16], to their networks via social media • "A link to an initial electronic survey (created using REDCap) was emailed to members of Cure JM, AF and LFA patient and family listservs and Healy et al [19], Rowbotham et al [25], and Siefried et al [30] posted on their respective social media sites." • "We also asked individuals and organisations within our existing networks to promote the study." • "All Steering Group members were requested to use pre-worded Tweets, which included the link to the survey." • "Invitations to participate in the research and a link to the online survey (in the relevant language) were sent via email. Those approached to complete the survey were identified using membership lists of the African Palliative Care Association (APCA)." Dyson et al [15]; Healy et al [19],

Providing individuals (eg, steering group members) within
Individual promotion-prewording • "All Steering Group members were requested to use pre-worded Tweets, which included the link to the survey." existing network with preword-Rowbotham et al [25], and Morse et al [23] ed tweets to promote the research participation opportunity on their Twitter accounts • "A bespoke Twitter account was set up @ques-tionCF with the associated hashtag #questionCF. This was managed by members of the steering group and aimed to promote the online surveys and increase participation."

External organizations
Correll et al [13], Dyson et al [14], External organizations posting on their respective social media Social media collaboration • "A link to an initial electronic survey (created using REDCap) was emailed to members of Cure JM, AF and LFA patient or family listservs and sites to promote research participation opportunity Han et al [17], Normansell et al [5], Siefried et al posted on their respective social media sites. The ranking survey was emailed to the Cure JM a , AF b , [30], and Oesophaand LFA c listservs and a link was posted on their go-Gastric Anastorespective social media sites." mosis Study Group [24] • "Tactica Interactive, a digital media enterprise, was hired to broaden our sampling frame via a Facebook advertising strategy." • "We collaborated with organisations interested in ARI d and patient engagement to advertise our research via websites and other channels..." • "A toolkit aimed at partnering organizations, which included a template for the invitation from the partner, a description of DiabetesSistersVoices, and promotional materials including flyers and postcards." • "A survey consisting of 27 questions was developed and distributed to surgeons from the OGAA e collaborative and advertised through specialty organizations' social media accounts" Han et al [17] Providing external organizations with toolkits, templates, Providing resources • "A toolkit aimed at partnering organizations, which included a template for the invitation from the partner, a description of DiabetesSistersVoic-or promotional materials that es, and promotional materials including flyers serve as guidelines for when and postcards." organization broadcasts research participation opportunity Studies providing evidence Representative quotes Technique description Category and specific technique Allsop et al [12], Dyson et al [14], and Normansell et al [5] • "We collaborated with organisations interested in ARI and patient engagement to advertise our research via websites and other channels:  [29], and Siefried et al [30] • "We used snowball sampling to recruit parents." • "First, we focused on identifying and engaging recruitment targets with the potential for a high yield of participants. We then expanded our scope through referrals and diffusion via social media." • "Through Facebook, friend networks were encouraged to invite each other to participate." • "Tell a Friend tool to invite friends or colleagues to participate, using e-mail-based peer-to-peer messaging." Disseminating research opportunity to participants' social networks to increase participation and access to specific populations N/A f Snowball recruitment Han et al [17] and Han et al [18] • "Facebook posts were "boosted" monthly to showcase the posts to more users."

Research Question 2: Measurement of Social Media Campaign Effectiveness
Across all the 23 included studies, 21 (91%) claimed to be successful in conducting health research priority-setting exercises via social media-based methods.
Indirect metrics for campaign effectiveness were (1) audience reach (ie, extent to which the survey sample was characteristic of the target population [13][14][15], number of countries and local communities represented in the sample [12,21], and number of national associations and external organizations contacted [12]);

Benefits and Limitations of Social Media-Based Research Priority Setting
All included studies (23/23, 100%) successfully gathered research priorities from key stakeholders and knowledge users using social media-based participant recruitment. Cited benefits related to social media use were the capacity to elicit participation from many knowledge users [14,15,17,18,27,31], the speed at which research priorities were gathered, the sense of community developed [17,31], peer-support offered to patients and family members [17,26,28,31] by social media campaigns, and the capacity for dissemination of health-promoting resources from health care professionals to patients. A cited limitation of social media-based methods was that web-only methods may limit the participation of individuals with limited or no access to technology, limited leisure time to engage with social media, and lower socioeconomic status and of older age [12][13][14][15]17].

Recommendations for Successful Social Media-Based Research Priority Setting
To improve the effectiveness of social media campaigns, authors recommended focusing on the campaign's graphic design components and style of messaging [26,31,32], creating opportunities for the target audience to personally interact with the team leading the campaign [31], and using platform-specific paid advertisements (ie, also termed boosts) [18,28].
Design-related recommendations included implementing illustrative and graphical sophistication, such as posts containing words, text, and video [31] and establishing a tone and style of graphics to create a consistent brand [26,32]. Messaging recommendations were to post some content that is not directly related to research, but of interest to community members-especially if these posts are community-led [22,26,31]; to avoid phrases that do not foster inclusivity and may separate the researchers from the target audience (ie, us vs them semantics); and to minimize scientific jargon in posts. Interaction-related recommendations involved using moderators [17,26], especially community members to build the authenticity of the campaign [27]; initiating conversations with perspective participants to break the ice; using software that supports face-to-face interaction between researchers and the community [31]; allowing peer-to-peer sharing (ie, providing community members with capacity to invite colleagues to participate) [17,22,26,28,29,31,33]; and using platform-specific boosts (eg, Facebook boosts) [18,28]. This last strategy corresponded with the highest recruitment and enrollment yields.
Recommendations to address the limitation that social media may prevent priority-setting participation by some groups were also suggested. These included implementing a hybrid of electronic and nonelectronic survey dissemination methods to increase the representation of those without access to technology [12,17,18], developing web-based materials with simple navigation requirements to allow participation by individuals with less experience with the web [30], and intentionally tailoring social media strategies (eg, hashtags and boosts) for subpopulations of individuals whom study teams identify as being underrepresented in research prioritization project data sets [13][14][15]17,21,25,32].

Principal Findings
Recognizing the importance of engaging key stakeholders in developing research agendas, we sought to use the extant literature to understand how social media might support research priority-setting, how effectiveness of the method might be measured, and the method's benefits and drawbacks. We show that multiple social media strategies, which differ depending on the social media platform, have been used to promote participation in research priority setting-with strong success rates in generating research agendas. Metrics to quantify the reach of these strategies included the number of impressions on posts (eg, likes and other reactions) and the volume of comments left by stakeholders. In addition to the benefits, limitations of the use of social media in research priority-setting were also identified. Results from this review can guide methods for research priority-setting by patients, family caregivers, health care professionals, and other advocates and support the engagement of these stakeholders in developing future research agendas.

Social Media Platform Strategies and Dissemination Techniques
Social media-based strategies that incorporated platform-specific amplification (eg, Facebook boosts) and components that encouraged active engagement by participants (eg, question-and-answer forums and shared resources) enabled researchers to reach a broad audience of possible participants. This finding agrees with the literature showing that Facebook [34] health promotion posts receiving a paid boost reached significantly more users. Hashtags were also used in the included studies to increase visibility of tweets, which aligns with previous research showing hashtag use as effective in influencing social media conversations related to mental health [35] and in cases where the desired participant pool is small [36].
Our finding that snowball sampling is used to disseminate priority-setting surveys and expand participant pools aligns with other research showing that options to like, tag, or share posts expand a social media campaign's reach [37]. This method may be particularly advantageous in cases where the campaign target audience is a specific and relatively small group (eg, people with lived experiences of less common diseases) and campaign participants may have contacts within their social network who they can engage in the process. Our results also suggest that there are priority-setting advantages in asking relevant external organizations and internal research and clinical team members to circulate survey links and use their personal or organization-affiliated social media accounts to expand reach.

Measurement of Social Media Campaign Effectiveness
We identified several metrics used by researchers to evaluate the effectiveness of social media campaigns, including the number of post impressions, frequency of viewed posts, volume of comments left by stakeholders, and number of times a bespoke hashtag was clicked or used. The heterogeneity in metrics likely reflects the exponentially growing number of social media platforms. However, the collection and interpretation of these social media impact metrics support ongoing consideration of the campaign's effectiveness and subsequent content adjustments to maximize campaign reach and engagement [35].

Benefits and Limitations of and Recommendations for Social Media Campaigns in Research
Commonly identified benefits of priority-setting via social media include the speed at which participation opportunities can be disseminated and the capacity to build a sense of community among participants-possibly enhancing engagement. Research has also indicated that social media may be particularly useful in targeting information at some rarely reached groups such as individuals with depression [38]. In addition, moderators might humanize the campaign, build possible participant's trust, and enhance campaign engagement by these individuals [39].
In contrast, limitations of social media-based methods for priority-setting research include the uncertainty of who is being captured through the posts [40]. Our study found that researchers commonly cite fears that social media-based methods may unexpectedly include or exclude the research priority perspectives of certain groups. In these cases, there are limited ways to assure that the recruited team of participants is the valid group of people that will render reliable results. This is problematic from ethical and methodological (ie, sampling bias) points of view and its mitigation requires careful planning. Moreover, when survey links are disseminated via social media, the true number of individuals that are reached cannot be calculated. This is because not all users will engage (ie, like, comment, and share) with the post [13,20]. In addition, although the platform analytics (ie, number of follows, comments, and likes on posts) are often used as an indication of survey engagement, these data may not be representative of the sample that opens the survey link or completes the survey.
Recommendations were also made to establish a consistent tone and branding, with a focus on using attractive graphic designs within priority-setting research campaigns. This consistency may increase the recognizability of the research project and authenticity to the effort, resulting in increased participation in priority-setting research efforts [41].

Limitations of Our Study
The definition of social media varies substantially in the literature and some definitions used did not meet our inclusion criteria. Our conclusions regarding the recruitment for priority-setting research projects may differ from those arising if a different definition was used. Varying definitions of social media may also have rendered our decision-making process during the screening phase susceptible to error. However, we screened in duplicate with good consistency and used third-party arbitration of discrepancies. Finally, amid the COVID-19 pandemic, the number of studies adapting to web-based research methodologies, especially using social media, may have increased after the search strategy was performed. Considering such rapid growth, it is important to note that this review is a snapshot at a particular point in time that does not account for novel methods that may have emerged after our search.

Recommendations for Practice and Future Research
Social media appears to be an effective means to recruit and involve participants in the research process. Thus, researchers should consider using web-based social networking as a method to recruit knowledge users, collect data, and translate knowledge into practice. The study team's efforts to build knowledge user trust in prioritization efforts, including by humanizing the campaign through moderating chats and engaging with participants, may improve engagement. On the basis of our findings, efforts can be supported by optimizing the visual representation of data through illustrative posts containing text and graphics. Moreover, to enhance participation by a wide group of knowledge users, researchers should focus on developing accessible and inclusive web-based materials. In addition, investing in platform-specific boosts (eg, Facebook boosts) and paid advertisements may be an effective tactic to enhance participant recruitment and enrollment.
Given the relatively recent emergence of digital platforms, social media-based methods are understudied compared with traditional recruitment means. We have identified some possible limitations of the method, such as potential limited access to individuals of lower socioeconomic status or older age. However, few studies have determined the extent to which these limitations impact prioritization efforts and, in the case of older adults, contrary evidence exists indicating good engagement with social media and technologies [42]. Should the identified limitations of social media-based priority-setting be significant, research into ways to mitigate these shortcomings is needed. Further research is needed to understand how to enhance the capacity of social media recruitment to capture representative samples. More research is also needed to understand which social media strategies and dissemination techniques are likely to be successful for research prioritization efforts, with the understanding that these strategies and techniques are likely to change over time as new social media platforms and features become available. Finally, given the highly public nature of information exchange on social media, considerations of the data privacy and security implications of social media-based research prioritization efforts are needed.