The Value Brief

IVI
  • 5.0 (7)
  • Medicine
  • Updated Monthly

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.

Episodes

  1. Jun 3

    Patients as Partners: Improving Rare Disease Research Through Early Engagement

    What happens when patients are involved in research from the very beginning, not just as participants, but as partners? In this episode of The Value Brief, host Rick Chapman is joined by Mousumi Bose, PhD, Associate Professor at Montclair State University, and Kristie DeMarco, Founder and President of the Global DARE Foundation, to discuss why meaningful patient engagement is essential to improving rare disease research, clinical trial design, and healthcare decision-making. Drawing on research expertise and lived experience, Mousumi and Kristie explore barriers to early patient engagement, the unique challenges of rare disease evidence generation, and how patient-centered research can lead to stronger evidence, better outcomes, and studies that reflect what matters most to patients and caregivers. The conversation also highlights the Rare Disease Patient Engagement (RDPE) Checklist, a practical framework designed to help researchers, patient organizations, industry leaders, and policymakers embed patient and caregiver perspectives throughout research and value assessment. Topics include patient engagement in healthcare research, rare disease evidence generation, patient-centered clinical trial design, caregiver perspectives, lived experience, building trust between researchers and patient communities, and strengthening value assessment and healthcare decision-making through patient input. Resources Rare Disease Patient Engagement (RDPE) ChecklistWatch the RDPE Checklist VideoPatient Collaborator Training Program2025 ULF Family Conference: From Silence to Science

    27 min

  2. Jan 27

    Beyond Price: Centering Patients in Drug Pricing Reform

    Host: Tiffany Huth, Head of External Affairs, Center for Innovation & Value Research Guests: Maia Laing, Chief Policy Officer, SickCellsSilas Martin, Head of Access & Policy Research, Johnson & JohnsonEpisode 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 reformWhere international pricing comparisons fall short for U.S. patientsHow affordability, access, and innovation can coexistThe importance of patient-generated evidence alongside economic modelsRelated 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 SummitValuing 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.

    30 min

  3. 08/11/2025

    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.

    32 min

  4. 07/10/2025

    Caregiving in America: Inspired by Bradley Cooper, Centering Voices and Solutions

    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 caregivingGaps in public policy and employer practicesStrategies 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.

    32 min

  5. 05/05/2025

    Urgency, Equity, and Engagement: Advancing Patient-Centered Value Research

    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 PharmacyDr. Magdalena Harrington, Senior Director of Patient-Centered Outcomes Assessment at Pfizer Together they discuss: Defining patient-centered value beyond clinical outcomesTurning patient insights into measurable, actionable healthcare improvementsThe essential role of trust, communication, and storytelling in patient engagementMoving from patient participation to true co-creation in healthcare researchWhat gives them hope—and urgency—for the future of value assessmentThis 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

    33 min

  6. 03/24/2025

    Amplifying Patient Voices: The Future of Engagement

    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.

    29 min

  7. 03/03/2025

    Breaking Barriers: Transforming Rare Disease Patient Engagement (Part 2) – Trust, Transparency, and Technology

    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/T59550UUorWLive-Stream Registration: https://ow.ly/CAMH50UUorU

    20 min

  8. 02/22/2025

    Breaking Barriers: Transforming Rare Disease Patient Engagement

    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/sUoE50UGr3cLive-Stream: https://ow.ly/xCuy50UGr3a

    21 min
  • 8 Episodes

Ratings & Reviews

5
out of 5
7 Ratings

About

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.

Information

  • Creator
    IVI
  • Years Active
    2025 - 2026
  • Episodes
    8
  • Rating
    Clean
  • Copyright
    © IVI
  • Show Website
    The Value Brief