Communicating Health Literacy on Prescription Medications on Social Media: In-depth Interviews With “Patient Influencers”

BACKGROUND: Historically, pharmaceutical companies have struggled with trust and brand reputation among key stakeholders and have adopted innovative marketing strategies to reach patients directly and rebuild those relationships. Social media influencers are a popular strategy to influence younger demographics, including Generation Z and millennials. It is common for social media influencers to work in paid partnerships with brands; this is a multibillion-dollar industry. Long have patients been active in online health communities and social media platforms such as Twitter and Instagram, but in recent years, pharmaceutical marketers have noticed the power of patient persuasion and begun to leverage “patient influencers” in brand campaigns. OBJECTIVE: This study aimed to explore how patient influencers communicate health literacy on pharmaceutical medications on social media to their communities of followers. METHODS: A total of 26 in-depth interviews were conducted with patient influencers using a snowball sampling technique. This study is part of a larger project using an interview guide that included a range of topics such as social media practices, logistics of being an influencer, considerations for brand partnerships, and views on the ethical nature of patient influencers. The constructs of the Health Belief Model were used in this study’s data analysis: perceived susceptibility, perceived severity, perceived benefits, perceived barriers, cues to action, and self-efficacy. This study was approved by the institutional review board of the University of Colorado and adhered to ethical standards in interview practice. RESULTS: As patient influencers are a new phenomenon, it was our goal to identify how health literacy on prescription medications and pharmaceuticals is being communicated on social media. Using the constructs of the Health Belief Model to guide the analysis, 3 themes were identified: understanding disease through experience, staying informed on the science or field, and suggesting that physicians know best. CONCLUSIONS: Patients are actively exchanging health information on social media channels and connecting with other patients who share similar diagnoses. Patient influencers share their knowledge and experience in efforts to help other patients learn about disease self-management and improve their quality of life. Similar to traditional direct-to-consumer advertising, the phenomenon of patient influencers raises ethical questions that need more investigation. In a way, patient influencers are health education agents who may also share prescription medication or pharmaceutical information. They can break down complex health information based on expertise and experience and mitigate the loneliness and isolation that other patients may feel without the support of a community.