A recently released study has discovered that many patient influencers give prescription drug advice to their followers without disclosing their relationships with pharmaceutical companies.
This practice raises concerns about their influence on patients and doctors’ prescribing habits.
The study’s author, Erin Willis, suggests the need to understand the impact of patient influencers’ content.
Recently, a TikTok handle has been promoting Wegovy, a prescription drug used for weight loss, and demonstrating how to inject it in a video. She is a patient influencer with no medical training, sharing her personal experience with her followers, The Guardian reported.
A 2020 survey conducted by Wego, a significant patient influencer agency, revealed that patient influencers are considered trustworthy by their audiences, as they often share personal and vulnerable stories about their health conditions.
The survey found that 51 per cent of respondents mostly or completely trusted patient influencers, whereas only 14 per cent trusted lifestyle influencers.
These influencers can earn a few hundred to a few thousand dollars for each social media post promoting a health product or service, depending on their online following and the health condition they focus on, according to Amrita Bhowmick, chief community officer at Health Union. Health Union acquired Wego in 2021.
Health Union recruits and approves influencers based on their existing online presence or participation in Health Union’s message boards for specific medical conditions.
The company claims to work with its influencers to ensure they follow best practices and rules, but there is currently no way to verify if influencers are on a drug company’s payroll and subject to regulation.
According to Willis, there is no published data on the size of the patient influencer industry, but it appears to be rapidly expanding.
Medical advertising agencies typically do not discuss their use of patient influencers, but Willis says that this is a strategy that pharmaceutical companies have found to be effective.
At a pharmaceutical marketing conference last summer, Willis asked the audience if they used patient influencers, and almost everyone in the room raised their hands.
Patient influencers are effective because they can push messaging beyond what is allowed on traditional media such as TV, which is closely scrutinised by regulators.
According to Willis, patient influencing is an “interactive form of advertising” that is difficult to regulate.
Willis’s study found that all 26 patient influencers she spoke to saw themselves as experts and aimed to raise awareness through their own experiences. However, some discussed medications they hadn’t taken, and many gave advice over private messages.
Willis is concerned about less visible content, such as short-form and disappearing videos, and the lack of disclosure about relationships with pharmaceutical companies.
With a vast number of patient influencers – Health Union alone boasts a network of “over 100,000 patient leaders” – it is unclear how many are providing unvetted medical advice or making money without proper disclosure.
Willis believes the lack of research on the patient influencer industry is a major problem, and it’s difficult to conduct research because people are hesitant to talk about it.
Advertising professionals are bound by NDAs, and the influencers themselves are often unwilling to discuss their relationships with companies.
Willis questions why there isn’t more transparency if there’s nothing wrong with the practice.