Dementia Research Engagement on Social Media: A Content Analysis

Abstract

AbstractBackgroundSocial media is a powerful tool for engaging diverse audiences in dementia research, especially healthy individuals who may not be actively seeking dementia research education or opportunities. However, there is little data summarizing current social media practices, content exchange, and ethical considerations in the context of dementia research. To inform ethical dementia research engagement on social media, we characterized current practices by analyzing public Facebook and Twitter posts.MethodWe searched for and downloaded from Facebook (2‐yr period) and Twitter (1‐yr period) all posts containing dementia research‐related keywords. We retrieved n = 7,990 Facebook posts after filtering for inclusion and exclusion criteria. The Facebook data aided the development of a machine learning model to search Twitter for dementia research‐related posts (n = 600,000). After filtering, we retrieved n = 10,000 top retweeted posts. We performed content analysis on a random sample (10%) of the Facebook and Twitter posts. Codebook development followed a qualitative manual coding strategy. Coding ceased when no new codes emerged from the data.ResultThe top 5 Facebook user spaces were Public groups (18%), Nonprofit organizations (18%), Medical & health (9%), Communities (8%), and Medical companies (7%). On Twitter, users with academic/research affiliations were the largest group. Sharing knowledge was the primary form of content exchange on Facebook (19%) and Twitter (21%); there were fewer research opportunities (<9%). Most posts contained linked or embedded media in the form of science news articles. Twitter likes (>100,000) were overall higher than Facebook reactions (>45,000). Although dementia ‘prevention/risk’ and ‘treatment’ were major topics for Facebook and Twitter, posts about ‘diagnostics’ had the most Facebook reactions (29%). Justice was a prominent ethics topic regarding inequalities related to race, ethnicity, culture, gender, and intersecting modes of marginalization in dementia research.ConclusionThe results demonstrate the importance of social media as an engagement tool of current topics in dementia research and reveal areas of potential for increased engagement. More data is needed on the social media guidelines followed by dementia researchers, especially regarding their effectiveness and contextual application. The next project phase will use these data to inform the development of a consensus on best practices in this area.