According to the new University of Colorado Boulder research, patients-turned-social-media-influencers routinely offer prescription drug advice to their followers and often have close ties with pharma. If they’re paid, they are DTC; you had better let your audience know they are compensated.

Patients trust other patients, and with trust in pharma companies and traditional media declining, drugmakers are now turning to actual patients as messengers on websites and social media.

Because they openly discuss sensitive and personal health problems — which run the gamut from chronic pain to cancer to psoriasis to multiple sclerosis — patient influencers come across as more sincere and potentially hold much more sway over their followers than social media influencers hawking handbags.

According to research from WEGO Health, 79% of patients look to connect through various types of social media to find answers to questions about their own experiences. And after a doctor visit, 76% use social media to ask other people about their experiences with medication, conditions, and diagnoses.

The WEGO Health survey data shows that only 14% of patients surveyed trust lifestyle influencers, versus 51% who mostly or entirely trust patient health influencers. Regarding branded pharma products, the survey was even more favorable for patient health influencers: 85% of patients said they would be somewhat or very receptive to an ad from a patient influencer promoting a drug related to the patient’s condition.

There are risks in using patient influencers. Influencers reported that followers frequently private message them to get detailed information about dosage and side effects. Influencers may stress the upsides of medications without fully disclosing the side effects, and that’s a significant problem.

The Journal of Medical Internet Research said, “patients are actively exchanging health information on social media channels and connecting with patients with similar diagnoses. Patient influencers share their knowledge and experience 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.”

So is it DTC?

If a pharma company sponsors it, the answer is yes. However, patient influencers can be a valuable voice to reach other patients. Two years ago, a client of ours held an online chat with an MS patient so she could share her experiences using their drug. A live legal and regulatory team monitored the online chat to minimize risk, but it went very well with over 1,500 people. The audience wanted to understand her experience(s) with the drug and talk about the side effects.

We clarified that the patient was compensated for her time and travel, but it didn’t matter. The woman we used was delighted to share her experiences. It went so well that the chat was archived on the product website.

The use of patient influencers comes with rules and regulations intended to protect consumers and bring some level of transparency. Experts and influencers say the role of patient influencers can help people navigate the often confusing world of health care, but it must be done ethically and honestly.

Frankly, I’m surprised patient influencers aren’t used more. Their voices are powerful for sharing information with others.