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, the importance of patient-centered engagement, and why co-developing AI tools with the communities they serve is essential to reducing bias and ensuring equitable innovation.
The Patient-Centered Value Research Checklist for Rare Disease is now open for public comment. We’re seeking input from researchers, HTA professionals, clinicians, industry partners, and patient advocacy leaders to ensure this tool is practical, inclusive, and grounded in real-world priorities.
The comment period runs from July 21 to August 18, 2025.
Learn more and submit feedback today.

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 Foundation, and Mandy Barr, Engagement Specialist at the Rosalynn Carter Institute for Caregivers. Together, they share personal caregiving stories and offer expert insight into the systemic barriers that leave caregivers, especially those raising medically complex children, without adequate support.

This powerful conversation explores:

• The emotional, financial, and professional impact of caregiving
• Gaps in public policy and employer practices
• Strategies to center caregiver voices in healthcare decision-making

Note: This episode was recorded before the official premiere of Caregiving. The film is now available to stream on PBS.org and PBS Passport.Learn more about the Center's Economic Impacts Project.

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 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: Methods Summit Summary