AI in Rare Disease Research: The Power of Patient-Centered Co-Development

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The Value Brief

The Center for Innovation and Value Research

6 episodes

4 days ago

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.

Medicine

Health & Fitness

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Medicine

Health & Fitness

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AI in Rare Disease Research: The Power of Patient-Centered Co-Development

The Value Brief

31 minutes 31 seconds

3 months ago

AI in Rare Disease Research: The Power of Patient-Centered Co-Development

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.