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:
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:
Together they discuss:
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
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 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. Learn more.
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-world evidence, AI, and emerging technology on patient outcomes.
Register for the Center for Innovation & Value Research's 6th Annual Methods Summit, March 19, 2025:
On-Site Registration: https://ow.ly/T59550UUorW
Live-Stream Registration: https://ow.ly/CAMH50UUorU
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.
Join the Center on Wednesday, March 19, 2025 for the 6th Annual Methods Summit for a deep dive into patient-centered value research. Register now:
On-Site: https://ow.ly/sUoE50UGr3c
Live-Stream: https://ow.ly/xCuy50UGr3a