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.
Rick Chapman, PhD
Chief Science Officer
Center for Innovation & Value ResearchHost
Charlene Son Rigby, MBA
Chief Executive Officer
Global GenesGuest Speaker
Adrian Kielhorn
Senior Director, Global HEOR Neurology
Alexion, AstraZeneca Rare Disease Guest Speaker