New Council Reflects Growing Partnerships with People with Lived Experience

Alexandria, VA — March 10, 2022 — The Innovation and Value Initiative (IVI), an independent, nonprofit research organization dedicated to advancing patient-centric value assessment, has named its Patient Advisory Council for 2022. The Patient Advisory Council reports to the IVI Board of Directors and provides insights and recommendations to guide the organization’s mission and goals.

“IVI is committed to ensuring that patients are full partners in the research and strategic vision of our organization,” said Jennifer Bright, IVI Chief Executive Officer. “Both our returning and new members bring incredible expertise and real-world experience to our organization.”

The 2022 Patient Advisory Council includes:

  • Alan Balch, Patient Advocate Foundation, CEO, IVI Board Liaison
  • Deanna Darlington, The Haystack Project, CEO
  • Mike Graglia, SynGAP Research Fund, Founder and Managing Director
  • Anna Hyde, Arthritis Foundation, Vice President of Advocacy and Access
  • Maggie Jalowsky, Sick Cells, Director of Advocacy
  • Annie Kennedy, EveryLife Foundation for Rare Diseases, Chief of Policy, Advocacy, and Patient Engagement
  • Stephanie Marshall, The Assistance Fund, Director of Patient Advocacy
  • Richard Seiden, Patient Advocate, former Partner at Foley & Lardner LLP
  • Danny van Leeuwen, Health Hats
  • Michael Ward, Alliance for Aging Research, Vice President of Public Policy and Government Affairs

The Patient Advisory Council is comprised of both individual and organizational members representing patient organizations across a range of perspectives. “The IVI Patient Advisory Council is a unique opportunity to collaborate on research projects and ensure that people with lived experience are part of value assessment from the outset,” said Anna Hyde, Vice President of Advocacy and Access at the Arthritis Foundation. “I am thrilled to continue to work with IVI and the Patient Advisory Council to ensure that people with lived experience are at the center of value assessment.”


About the Innovation and Value Initiative
The Innovation and Value Initiative (IVI) is an independent 501(c)(3) nonprofit research organization that puts patients at the center of value assessment to advance the science, practice, and use of all health technology assessments. Patient-centricity, transparency, and open-source modeling are hallmarks of IVI’s value assessment approach. IVI conducts and funds research to improve scientific methods for value assessment; utilizes its transparent open-source modeling so value assessments improve equitable resource allocation; and convenes decision-makers across the healthcare spectrum to improve how assessments are used in the real world.

Media Contact: Eric Hoffman, (202) 285-0810