A Zebra, Not a Horse: Rare Patient Voice

Introducing Wesley Michael

I attended yet another session with healthcare experts, where I heard clinicians and academics say, “we’re all patients.” If I spoke to them as Patient Smith rather than Dr. Smith, would they embrace their inner patient? I don’t know. I didn’t test it. Lived experience takes many forms — advocacy, coaching, expert panels, advisory panels, informing research and more. Many patient experts and advisors struggle with the tension of receiving payment for their lived experiences. What’s the value if their expertise is successful living with a medical condition? What if they were business, marketing, advocacy, policy consultants without lived experience? What would they be paid? What’s the value of this combined expertise in the market? Wesley Michael, a marketing entrepreneur, founded a company, Rare Patient Voice, to offer companies and researchers panels of rank-and-file people with lived medical experience to inform product marketing and participate in qualitative research. Rare Patient Voice pays patient-participants a flat hourly rate.

Health Hats: Good morning, Wes. Thanks for joining me.

Wesley Michael: It’s great to be with you, Danny. This is exciting.

Health Hats: How do you introduce yourself in a social situation?