The Value Brief

What happens when patients are involved in research from the very beginning, not just as participants, but as partners? In this episode of  The Value Brief , host  Rick Chapman  is joined by  Mousumi Bose, PhD , Associate Professor at Montclair State University, and  Kristie DeMarco , Founder and President of the  Global DARE Foundation , to discuss why meaningful patient engagement is essential t...

Host: Tiffany Huth, Head of External Affairs, Center for Innovation & Value Research Guests: Maia Laing , Chief Policy Officer, SickCells Silas Martin , Head of Access & Policy Research, Johnson & Johnson Episode Summary This episode explores how drug pricing reform can move beyond price to better reflect patient-centered value . Recorded following the 2025 Fall Policy Summit , the dis...

In this episode, we explore how artificial intelligence (AI) is reshaping rare disease research, from speeding up diagnosis and improving data collection to guiding more effective treatment decisions. Guests Tricha Shivas (Foundation for Sarcoidosis Research) and Michael Hager (Ready, Aim, Innovate) share insights on the promise and pitfalls of AI in healthcare. They discuss genetic breakthroughs,...

In this special episode of  The Value Brief , released in tandem with the PBS documentary  Caregiving , executive produced by Bradley Cooper, we spotlight the urgent and often overlooked challenges facing caregivers in the United States. Host Dr. Richard Chapman, Chief Science Officer at the  Center for Innovation & Value Research , is joined by  Sarita Edwards , President and CEO of the E.WE...

What does it truly mean to practice patient-centered research, and how can we ensure patient voices drive real healthcare change? In this episode of The Value Brief, host Larragem Raines, Director of Research at the Center for Innovation and Value Research, is joined by two leaders in the field: Dr. C. Daniel Mullins , Executive Director of the PATIENTS Program at the University of Maryland School...

Patient engagement is essential for better health outcomes, but what does authentic engagement look like? In this episode of  The Value Brief ,  Swapna Kakani , co-founder,  The Gutsy Perspective , and  Greg Martin , Chief Officer, Engagement, Dissemination, and Implementation at  Patient-Centered Outcomes Research Institute (PCORI ), share insights on breaking down barriers, fostering trust, and...

In this second part of our conversation with  Adrian Kielhorn  (Alexion, AstraZeneca Rare Disease) and  Charlene Son Rigby  (CEO of  Global Genes ), we continue exploring the challenges and opportunities in rare disease patient engagement. This episode examines the role of pharmaceutical companies and healthcare providers in building trust, the importance of transparency, and the impact of real-wo...

This is Part 1 of a 2-part series exploring the challenges rare disease patients face in accessing care, influencing policy, and making their voices heard. In this episode, we explore how healthcare leaders, researchers, and advocates are working to break down barriers and build meaningful engagement strategies. Featuring insights from   Adrian Kielhorn, a leader in economic research at Alexion, A...