The Power of the Patient Voice: Shaping Clinical Research and Regulatory Processes

Chime In, Send Us a Text or Voice Message! On Episode 98, our guest Bray Patrick-Lake shares her journey from community work to patient advocacy, her experiences with FDA panels and regulatory expertise, and insights on building impactful patient-led organizations. We explore the importance of patient voice, funding challenges, and future opportunities in healthcare advocacy and patient engagement.  In a full circle moment, co-host David and Bray share a few fun memories together in the early days of patient engagement with their advocacy work together with the former PFO Research Foundation and how they impacted change for better patient choice and quality of life for patients with PFO/Migraines/Stroke. David also did a deep dive on the latest PFO science, research and milestones with the PFO Research Foundation in his book Closure After Stroke. Key Topics Covered: Bray Patrick-Lake's background in community work and law enforcement Her medical journey and transition into patient advocacy The formation and impact of the PFO Research Foundation Challenges in funding and sustaining patient-led organizations The role of clinical advisory boards and patient input in research and regulation Success stories and lessons learned from FDA panels and advocacy efforts Future opportunities for patient engagement and healthcare innovation Takeaways: Patient advocacy often starts from personal medical experiences and community work. Funding remains a critical challenge for sustaining impactful patient organizations. Patient voices are essential in regulatory and clinical research processes. Building collaborations among stakeholders can lead to successful FDA engagement. Technology and social media have transformed patient education and advocacy. Patient input should be integrated systematically into clinical trials and policy. Persistence and passion are key drivers of change in healthcare advocacy. Opportunities exist for patients to influence healthcare through regulatory involvement. More about our guest:  https://www.linkedin.com/in/bray-patrick-lake-67b80613/ Mentions: search PFO/Migraine/Stroke Facebook Group (formerly PFO Research Foundation) Support Our Show! Thank you for helping us to continue to make great content. We appreciate your generosity! Order David's Book, Closure After Stroke Preorder now on Amazon for Kindle early release July 4th. Paperback and hardcover September 28th! DRYYP Sauna Find out more about Mike's new business venture, DRYYP Sauna. Get Our News Get Our Latest News and Show Updates on Substack Disclaimer: This post contains affiliate links. If you make a purchase, I may receive a commission at no extra cost to you. Support the show Show credits: Music intro credit to Jake Dansereau. Our intro welcome is the voice of Caroline Goggin, a stroke survivor and our first podcast guest! Please listen to her inspiring story on Episode 2 of the podcast. Connect with Us and Share our Show on Social: Website | Linkedin | Twitter | YouTube | Facebook | Substack Know Stroke Podcast Disclaimer: Our podcast and media advertising services are for informational purposes only and do not constitute the practice of medical advice, diagnosis or treatment.  Get Our Podcast News Updates on Substack