University of Colorado Boulder recently published a report that sought to understand the way patient influencers communicate health literacy on pharmaceutical medications on social media to their followers. The report found that social media influencers hired by pharmaceutical companies play a positive role in patient education. However, the same report also cautioned against the use of influencers in pharmaceutical marketing campaign, noting that more regulations may be needed to ensure trust and transparency in the information provided.
The study was part of a larger project that included a range of topics, including social media practices, the logistics of being an influencer, considerations for brand partnerships, and views on the ethical nature of patient influences. In conducting the study, the authors performed 26 interviews with patient influencers. These patient influencers are in a variety of “disease categories” but they tend to be “intimately familiar with the health care system and living with a chronic disease.”
Patient influencers are different from other social media influencers who may focus their niche on selling lifestyle or pop culture items, as they typically create content and collaborate with pharmaceutical companies directly to raise awareness and increase health education among their peers who have a shared interest in a particular disease or condition. Their content tends to focus on “being a patient, having a high quality of life, and sharing experiences to help other patients do the same.”
The study found that patients are active on social media platforms and enjoy connecting with other patients who may understand their condition and situation. Patient influencers typically share their own knowledge and experience to help others learn about disease self-management and how to improve their quality of life. In a way, the study authors felt that patient influencers are “health education agents” who may share prescription medication or pharmaceutical information and are able to break down complex health information based on their own experience or expertise and lessen the loneliness and isolation that other patients may feel with a lack of community support.
Of the study participants, all had been living with their condition or disease for several years and considered themselves to be “expert patients” that are “well-versed in the healthcare system.” About 38% of study participants were also actively involved with nonprofit organizations related to their condition or disease, organized face-to-face and web-based support groups, and raised money for research. The overwhelming majority of participants (24 of the 26) said they shared their content so that others “would not be susceptible to a lack of information or education.” While four of the participants said there was a “method to the madness” related to what content they shared when, the other 22 posted on a whim, when they had something happening in their life that they thought others would enjoy or be interested in.
Additionally, most of the participants (18/26) noted that they worked with for-profit brands and pharmaceutical companies, but maintained a focus on benefitting their followers and supporting them through the disease journey. Interestingly, all study participants agreed that they would not give medical advice, but would instead recommend the patient contact their physician with questions about prescription medications. They also unanimously agreed that illness and disease present differently for every patient and it is outside of their expertise to offer any medical guidance.
The study also seems to recommend that research be conducted to understand how paid partnerships between patient influencers and pharmaceutical companies are actually perceived by other users or what content is being disseminated.
Possible Solutions
While the report seems to advocate for greater regulation in this area, this is an area that is already somewhat regulated. Any additional guidance may be best coming from industry groups, such as PhRMA, Bio, and AdvaMed. The pharmaceutical company self-regulates a lot of its own activity, and a “newer” form of advertising may be best understood by those in the industry, not governmental entities.
Also, the United Kingdom’s Prescription Medicines Code of Practice Authority (PMCPA) recently published new social media guidance to help pharmaceutical companies continue to apply the high standards in the Association of the British Pharmaceutical Industry (ABPI) Code of Practice to online communication channels.