How Policy and Patient Voices Are Transforming Clinical Research with Mary McGowan

In this episode of Voices of Inclusive Research, Dr. Ren speaks with Mary McGowan, President and CEO of the Foundation for Sarcoidosis Research, about the importance of awareness, policy change, and patient-centered solutions in advancing health equity.Mary shares insights on sarcoidosis, a complex and often misunderstood inflammatory disease that disproportionately impacts communities of color, especially Black women. As they dive deep into conversation, they explore the importance of initiatives like Champions for Change, which encourage organizations to provide paid time off for clinical trial participation, and emphasize the need for collaboration across community groups, researchers, and industry leaders.This episode is a reminder that meaningful change happens when we listen to communities, take action on what we hear, and keep patients at the center of every decision.Must-Hear Insights and Key MomentsRaising Awareness: Understanding sarcoidosis and why awareness is critical, especially in underserved communitiesBeyond Trust: Recognizing that lack of awareness and not being asked are major barriers to clinical trial participationPolicy in Action: How community feedback led to FMLA protections for clinical trial participantsBreaking Barriers: Addressing real-life challenges like job security, finances, and accessPower of Patient Voice: How listening to communities can drive nationwide changeCollaboration Matters: Why partnerships between organizations, communities, and industry are essentialSustainable Change: The importance of ongoing education, advocacy, and awarenessAbout MaryMary McGowan is the President and CEO of the Foundation for Sarcoidosis Research, the leading international organization dedicated to improving the lives of those living with sarcoidosis. She leads efforts to improve clinical trial access, advance shared decision-making, and accelerate drug development.Through initiatives like the Ignore No More Campaign, the Coalition to Advance Clinical Trial Engagement, and the FSR Global Sarcoidosis Clinic Alliance, Ms. McGowan is recognized for her strategic and collaborative leadership in advancing impactful, scalable solutions for rare disease patients.Follow Mary  McGowan:LinkedInFollow Dr. Ren:WebsiteInstagramLinkedInWe Want to Hear Your Voice!Your insights on how inclusive research impacts your life and community are invaluable. Share your experiences and thoughts on how we can bridge the gap between research and real-world needs. Your stories drive our mission and inspire the future of inclusive research!