In this thought-provoking episode of Desperate for a Diagnosis, host Laura Nozicka welcomes back Pam Cusick, a seasoned research professional and Senior Vice President of Rare Patient Voice. As one of Laura’s first-ever podcast guests, Pam returns to reflect on the evolution of patient-centered research and the growing importance of real human connection in a world increasingly shaped by AI and automation.
Together, they explore the emotional, logistical, and ethical nuances of recruiting patients and caregivers for market research and clinical trials. Pam shares how Rare Patient Voice is building meaningful bridges between patients and research opportunities—often reaching those with rare and overlooked conditions—and ensuring participants feel truly seen, heard, and valued.
Listeners will hear about:
The therapeutic power of being interviewed as a patient
Why sharing research results with patients matters
The rise of AI-generated “synthetic patients” and its potential risks
Common recruitment red flags and how RPV maintains respondent quality
Cultural and logistical barriers to research participation—and how to break them down
What researchers can do to build more inclusive, compassionate, and effective studies
Whether you're a market researcher, healthcare professional, or patient advocate, this conversation will remind you: the most powerful data still comes from real human stories.
Learn more about Rare Patient Voice:
www.rarepatientvoice.com
Connect with Laura Nozicka
Email: lauramarie@desperateforadiagnosis.com
Website: www.desperateforadiagnosis.com
YouTube @desperateforadiagnosis
Instagram @desperateforadiagnosis
TikTok @desperateforadiagnosis
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