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 discussion examines the role of lived experience, evidence, and innovation in shaping more equitable, sustainable drug pricing policy.

What You’ll Hear

• Why patient-centered value must be central to drug pricing reform
• Where international pricing comparisons fall short for U.S. patients
• How affordability, access, and innovation can coexist
• The importance of patient-generated evidence alongside economic models

Related Resources & Events

J&J Center for U.S. Healthcare Policy Research:
https://policyresearch.jnj.com/

Why Accounting for Heterogeneity Matters in U.S. Economic Analyses:
https://policyresearch.jnj.com/why-accounting-for-heterogeneity-matters-in-u-s-economic-analyses

SickCells Policy Forum (March 17–18) – Registration now open https://sickcells.org/policy-forum/

Center’s 2026 7th Annual Methods Summit
Valuing Innovation: Expanding Definitions of Value

Wednesday, March 25, 2026, 9:00 AM – 5:00 PM EDT

USC Capital Campus, Washington, DC

Register now to attend in-person or via livestream.

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.