Co-creating ethical recommendations for social media engagement in dementia prevention research

OBJECTIVE: To co-create evidence-based ethical recommendations to guide social media engagement for dementia prevention research. BACKGROUND: Social media has the potential to be an effective engagement tool for dementia prevention research. The Lancet Commissions estimate that 40% of future dementia cases may be prevented by addressing modifiable risk factors. Engaging cognitively unimpaired participants is difficult in prevention research, as these individuals are not likely seeking dementia-related resources. Social media is popular amongst younger aging populations and supports prolonged engagement of prevention research content. There is a lack of practical ethical guidance addressing variations in norms across disciplines and ethics boards. Existing approaches leave large interpretive gaps for ethical application. Strategies are needed to address key ethical issues and contextualize guidance of social media use in dementia prevention research. METHODS AND RESULTS: Aim 1) involved a systematic capture of existing social media content exchange practices within the dementia research context. Content analysis of a subset of public Facebook (N=7,896) and Twitter (N=9,323) posts about dementia research revealed that prevention was a major topic. Facebook advocacy organizations and Twitter academics were the main users sharing dementia research content. Aim 2) was an investigation into the motivators, barriers, and ethical issues in social media use by conducting semi-structured interviews with professional experts (n=15) and experts by experience (n=14). Analysis of interview transcripts consisted of qualitative thematic data analysis. Aim 3) established expert consensus via an online, modified Delphi process. A panel of 16 experts with lived (n= 10) and professional (n=6) experiences co-created a set of recommendations to guide ethical social media use for dementia prevention research. Twenty-six items attained panelist agreement. Recommendations are organized into seven social media use cases: setting up a social media page, handling online misinformation, actively challenging stigma, handling difficult online interactions, introducing new research to the public, help with study recruitment, and the language of prevention when crafting posts. CONCLUSIONS: The co-creation process resulted in consensus recommendations for social media use in dementia prevention research. These seven use cases support participant involvement in dementia research to aid scientific innovation and improve positive future health outcomes in aging.