Educators, Not Influencers: Health Content Creator Perspectives on Research Recruitment Collaboration

Medical mistrust and delayed diagnoses drive patients to seek information outside of formal healthcare channels, meaning that traditional research recruitment methods then struggle to reach them. Social media health content creators with large followings possess an established online community presence and trust that could address this recruitment gap.

To investigate how influential women's health content creators define their role, make decisions about content sharing, and evaluate research recruitment collaboration opportunities. This study aimed to understand how researchers can optimise study recruitment via influencer mechanisms.

Semi-structured interviews were conducted with 22 women's health influencers across 11 countries, in English, French, German and Italian. Influencer follower counts ranged from 1300 to over 700,000. Data were analysed using reflexive thematic analysis.

Six themes emerged: (1) Educators, not influencers; (2) mission as motivation; (3) leveraging reach; (4) care-centred gatekeeping; (5) values-led reciprocity; and (6) collaboration beyond logistics. Themes were examined against established influencer theories of Source Credibility, Similarity-Attraction, and Social Exchange, which operated at both influencer-follower and researcher-influencer relationship levels.

Health content creators function as mission-driven educators and careful gatekeepers who evaluate research opportunities against very specific criteria aligned with their own values. Their credibility, expertise, and shared experiences with followers have the potential to enable health behaviour change among their audience. They desire genuine research partnerships with early engagement and recognition of expertise. Strategic partnership models should therefore position creators as valuable collaborators in study design and recruitment rather than as advertising channels alone.

This study was conducted in collaboration with Live UTI Free Ltd., a patient-led research and advocacy organisation. All the researchers have lived experience of recurrent or chronic UTI and other conditions within the focus of the study. Patient researchers co-led all study stages: design, interview guide development, data collection, and analysis. Their lived experiences of seeking health information online about underserved conditions was essential for understanding how health content creators connect with online patient communities. Patient researchers conducted multilingual interviews and provided critical interpretation of findings. Members of the broader patient community identified health content creators as suitable interview participants.