THE VALUE BRIEF
A Center for Innovation & Value Research Podcast
Welcome to The Value Brief, the official podcast of the Center for Innovation & Value Research. Dedicated to advancing patient-centered outcomes, healthcare equity, and transparency in value-based care. Through conversations with healthcare leaders, researchers, and patient advocates, we explore how innovative strategies and collaborative efforts can drive meaningful change in healthcare decision-making. Each episode tackles issues like ensuring fair access to care, improving transparency in healthcare research, and amplifying patient voices. By sharing expert insights and real-world applications, The Value Brief fosters critical discussions that shape the future of healthcare.
Episode 1: Breaking Barriers (Part 1)
Transforming Patient Engagement in Rare Disease
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, AstraZeneca Rare Disease, and Charlene Son Rigby, CEO of Global Genes, we discuss the financial burdens rare disease patients face, the role of industry collaboration, and how trust and transparency can drive better patient outcomes. Tune in to discover innovative approaches that empower patients and shape the future of rare disease care.
Episode 2: Breaking Barriers (Part 2)
Transforming Rare Disease Patient Engagement: Trust, Transparency, and Technology
In this second part of our conversation with (Alexion, AstraZeneca Rare Disease) and (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-world evidence, AI, and emerging technology on patient outcomes.
Episode 3: Amplifying Patient Voices: The Future of Engagement
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 Executive Officer, Engagement, Dissemination, and Implementation at the Patient-Centered Outcomes Research Institute (PCORI), share insights on breaking down barriers, fostering trust, and shaping healthcare solutions that reflect patient voices.
Join host Jason Spangler as we explore grassroots advocacy, real-world collaboration, and PCORI’s efforts to drive patient-centered research.
Provide input on the Blueprint for Patient-Centered Value Research—a resource designed to foster meaningful partnerships with patients throughout value research. Open Public Comment Period: March 4 – April 4, 2025.
Episode 4: Urgency, Equity and Engagement: Advancing Patient-Centered Value Research
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 & 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 of Pharmacy
- Dr. Magdalena Harrington, Senior Director of Patient-Centered Outcomes Assessment at Pfizer
Together they discuss:
- Defining patient-centered value beyond clinical outcomes
- Turning patient insights into measurable, actionable healthcare improvements
- The essential role of trust, communication, and storytelling in patient engagement
- Moving from patient participation to true co-creation in healthcare research
- What gives them hope—and urgency—for the future of value assessment
This thoughtful conversation offers practical strategies for translating lived experiences into research, improving outcomes, and advancing equity in healthcare evaluation.
Listen now to learn how patient voices can drive lasting change in healthcare systems.
Learn More: 6th Annual Methods Summit Summary