The Secret to Giving Patients a Voice That Researchers Can’t Ignore

In this episode, Wes Michael shares the story behind founding Rare Patient Voice, how it connects patients with researchers, and the future of patient-centered healthcare. Discover how patient voices are shaping medical research and treatment development.

You will further discover:

• The origin story of Rare Patient Voice
• How patient panels are built and used in research
• The importance of listening to diverse patient voices
• Future directions for global patient engagement
• The role of technology and social media in patient recruitment
• Challenges and frustrations in patient research participation
• The impact of patient feedback on drug development
• The importance of inclusivity in patient research
• Wes Michael's personal motivation and experiences
• The merger with Konovo and future growth plans

Wes' Bio and Contact Information

Wes Michael founded Rare Patient Voice (RPV) in 2013 to give patients and family caregivers the opportunity to voice their opinions through taking part in all types of research studies. Rare Patient Voice has now recruited for thousands of studies and rewarded patients and family caregivers with over $18 million for their participation. Many have been recruited in person by Wes and his team at patient events and through a robust referral program with patient advocacy and support groups. Rare Patient Voice now covers over 1,500 rare and non-rare diseases and conditions and has expanded from the United States to Canada, the United Kingdom, France, Germany, Italy, Spain, Australia, and New Zealand. In 2026, RPV was acquired by Konovo, a healthcare technology and insights company.

Before launching Rare Patient Voice, Wes worked for healthcare market research firm Kantar Health. He previously was a brand manager and market research manager at McCormick (the spice company) and General Mills (working on Wheaties, Total and Kix cereals). He has a BA from the University of Pennsylvania (with a year at Edinburgh University) and an MBA from the University of Chicago.

Resources and Contact Information

Rare Patient Voice Website - https://www.rarepatientvoice.com

Canovo Healthcare Technology - https://www.canovo.com

LinkedIn Profile of Wes Michael - https://www.linkedin.com/in/wes-michael

Music licensed through Soundstripe.

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