Exploring the use of social media and online methods to engage persons with lived experience and healthcare professionals in creating research agendas: Lessons from a pediatric cancer research priority-setting partnership

Abstract

Social media is increasingly used to engage persons with lived experience and healthcare professionals in research, however, there remains sparse guidance on how to effectively use social media to engage these groups in research agenda-setting. Here we report our process and experience utilizing a social media campaign to engage Canadians within the pediatric cancer community in a research priority-setting exercise. Following the James Lind Alliance method, we launched a priority-setting partnership (PSP) to develop a child with cancer-, survivor-, family member-, and healthcare professional-based Canadian pediatric cancer research agenda. Social media-based strategies were implemented to recruit participants for two PSP surveys, including preparatory activities, developing a website, launching graphics and advertisements, and engaging internal and external networks. Descriptive statistics of our data and analytics provided by the platforms are used presently to report our process. The framework we implemented involved preparing for social media use, identifying a target audience, developing campaign content, conducting the campaign, refining the campaign as needed, and evaluating its success. Our process resulted in a substantial social media-based reach, good survey completion rates, and a successfully developed pediatric cancer community-specified research agenda. Social media may represent a useful approach to engage persons with lived experience and healthcare professionals in research agenda development. Based on our experience, we present strategies to increase social media campaign engagement that may be useful to those seeking to conduct health research priority-setting exercises.