If you've ever felt like healthcare "listens" to patients the way a cat listens to a vacuum… this episode is for you. Wes Michael (Rare Patient Voice) breaks down what it really takes to build a community where patients feel safe, respected, and actually heard and how that trust turns into better research, better decisions, and better outcomes in rare disease.
Skot and Wes talk about the company's evolution, why patient time should be compensated, how surveys and interviews turn lived experience into usable insight, and the difference between "collecting data" and "earning truth." You'll also hear why caregivers matter, what advocacy looks like in practice, and how meaningful work scales when you protect the human part of the process.
Timestamps:
00:00:00 – Intro & Highlights
00:04:34 – Rare Disease Day and Why This Conversation Matters
00:05:04 – The 12-Year Cycle: Why Wes Chose to Make a Big Change
00:07:41 – Working with Pharma: Where Patient Insight Fits
00:08:19 – Paying Patients for Their Time (and Why That's Respect)
00:09:35 – Surveys, Interviews, and Capturing the Real Story
00:13:26 – Turning Lived Experience into Useful Data and Decisions
00:17:22 – Caregivers: The Missing Piece Most People Overlook
00:23:59 – Lightning Round: Trust Killers, Hiring Lessons, Keeping Promises
00:32:20 – Advocacy, What's Next, and Wrap-Up
Website: rarepatientvoice.com
LinkedIn: www.linkedin.com/in/wesmichael
Instagram: www.instagram.com/rarepatientvoice
Facebook: www.facebook.com/rarepatientvoice
