October 27, 2021
IVI Methods Summit - Public Meeting

Purpose: Level knowledge and framing of the key questions, as well as establishing awareness of initiatives and progress made to date in the incorporation of patient perspectives in comparative effectiveness research and value assessment. This session is open to the public.

10:00 am ET

Introduction and Framing of the IVI Methods Summit
Jennifer Bright, Executive Director and Rick Chapman, Chief Science Officer, Innovation & Value Initiative (IVI)

10:10 am ET

Keynote Address
Dana Gelb Safran, Sc.D., President & CEO, National Quality Forum

Offers perspective on the central role of outcomes measurement to the sustainability and success of value-based payment, and will share a model for accelerating progress toward the next generation of measures to advance improved outcomes, equity, patient-centeredness and affordability.

10:25 am ET

Taking the Next Leap: What Have We Learned and Where Can Including Patient Perspectives Have Impact?
In a fireside chat, patient representatives will discuss real-world case examples as a reference point for demonstrating the complexity and impact of patient perspectives in healthcare design and decision-making.
Moderator: Annie Kennedy, EveryLife Foundation for Rare Disease

  • Maggie Jalowsky, Sick Cells

  • Nathaniel Counts, Mental Health America

  • Marjana Marinac, JDRF

  • Hugo Campos, All of Us Research Program Stanford Medicine X

11:15 am ET

Question & Answer Session

11:25 am ET


11:35 am ET

How Regulators, Payers, Purchasers, and Policymakers Can Incorporate Patient Priorities Into
Research and Value Assessment

The reactor panel will feature a facilitated discussion from stakeholders that develop and use patient-generated data and perspectives. Using the case studies as a reference point, panelists will explore both barriers and opportunities for alignment and change.
Moderator: Ilisa Halpern Paul, District Policy Group, Faegre Drinker Biddle & Reath, LLP


  • Erin Holve, DC Department of Healthcare Finance

  • Patrick Gleason, Prime Therapeutics

12:15 pm ET

Question & Answer Session

12:25 pm ET


12:55 pm ET

How Do Methods Align with Patients?
This panel will feature a facilitated discussion with stakeholders who conduct and use research on patient perspectives to emphasize areas of work in methods, including issues of rigor, novel methods, and fit for purpose in decision making.

Moderator: Rick Chapman, Innovation & Value Initiative (IVI)


  • Cara Nikolajski, UPMC

  • Juan Marcos Gonzalez, Duke University School of Medicine

  • Shana Traina, Janssen / Johnson & Johnson

  • Upal Basu Roy, LUNGevity Foundation 

1:30 pm ET

Question & Answer Session

1:40pm ET

Reactions, Wrap-up and Next Steps
Ilisa Halpern Paul, District Policy Group, Faegre Drinker Biddle & Reath, LLP


  • Margaret Rehayem, National Alliance of Healthcare Purchaser Coalitions

  • Annie Kennedy, EveryLife Foundation for Rare Disease

2:00 pm ET



October 28, 2021
Small Group Discussions

Purpose: Explore key questions and areas of priority using qualitative dialogue in a roundtable, small group format. Each session will be moderated using a similar format/questions. Sessions to be analyzed for common themes. Invitation-Only.
Participants to be pre-assigned to one (1) small group discussion of 75-minute duration. Up to 4 groups will be facilitated to keep sessions interactive.

Sessions will run between 10:00 am - 3:00 pm ET

November 4, 2021
Consensus Action Agenda


Purpose: Consensus dialogue focused on prioritizing areas of notable impact and for action to advance the collection and use of data on patient perspectives in patient-centered research and value assessment.

10:00 am ET

Welcome and Agenda Review
Ilisa Halpern Paul, District Policy Group, Faegre Drinker

10:05 am ET

Review of Top Takeaways: Methods Summit and Small Group Discussions

  • What is missing from this top list of takeaways (limited to no more than 10)?

  • What (if anything) could be removed?

Jennifer Bright, Innovation and Value Initiative

Andrew Hu, Patient-Centered Outcomes Research Institute (PCORI)

10:40 am ET

Setting Near-Term Priorities

  • Where do we start?

  • On which areas can we take action in the next 12-24 months?

  • What actions are needed to advance these priorities?

  • What are the elements of success?

11:25 am ET

Wrap-up and Next Steps

11:30 am ET