Tools to Support Sponsor-Patient Engagement: Fair-Market-Value Calculator and Engagement Templates

Fair-Market Value Compensation (click here) & Contracting Principles (click here): Now Open for Comment 

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*This document was originally developed by Myeloma Patients Europe, WECAN, and Patient Focused Medicines Development. With the permission of these organizations, the National Health Council is seeking comments on adapting their document for use in the United States

The NHC wants to ensure that all stakeholders confidently enter into ongoing, compliant, and sustainable engagement efforts that effectively drive health care innovation based on patient and caregiver insights, which must be collected in a trusted and high-quality manner. This project aims to support sustainable agreements between stakeholders and the patient and caregiver community as part of medical product development by:

  1. Developing, for U.S. use initially (adding other countries in the future), a fair-market value (FMV) calculator for compensation of patients and patient groups involved in “patient engagement activities” taking place between patient organizations and/or unaffiliated patients and private companies. The final product will be a calculator that companies can use and further customize for their own needs. Also, building blocks, such as engagement activities and principles, will be included.
  2. Adapting, for use in the U.S., the Conflict-of-Interest Principles and Privacy Principles (with examples) developed by the E.U. Patient Focused Medicines Development (PFMD) initiative to create standardization across all activities.
  3. Adapting, for use in the U.S., the contract templates developed by PFMD to simplify and standardize the process for patient and patient groups.

Download a summary of this project.

Read more on our blog.

  • Kate Avery, Director of Research, Beyond Celiac
  • Valerie Barton, Chief Data Strategy Officer, People-Centered Research Foundation
  • John Boyle (and Lynn Albizo), President & CEO, Immune Deficiency Foundation
  • Nicholas Brooke, Founder & Executive Director, Patient Focused Medicines Development
  • Barbara Collura, President & Chief Executive Officer, RESOLVE
  • Louisa M. Daniels, Vice President & Assistant General Counsel, Chief Counsel, Global Product Development, Pfizer
  • Tracy Hart, Chief Executive Officer, Osteogenesis Imperfecta Foundation
  • Ellen Ivey, National Advocacy Policy Director, Strategic Customer Group, Oncology, Solid Tumor, Johnson & Johnson
  • Jan Nissen, Vice President, Patient Innovation, Merck
  • Amber Spierer, Executive Director, Patient Advocacy and Strategic Alliances, Advocacy and Access, Novartis
  • Louise Vetter, President & Chief Executive Officer, Huntington’s Disease Society of America
  • Rebekah Angove, Vice President, Patient Experience & Program Evaluation, Patient Advocate Foundation
  • Julie Eller, Arthritis Foundation, Director, Patient Centered Strategies
  • Courtney George, Ethics & Compliance Business Partner, UCB, Inc.
  • Jason Harris, Director, Public Policy, Lupus Foundation of America
  • Dory Kranz, Chief Executive Officer, National Alopecia Areata Foundation
  • Nancy Law, Chief Executive Officer, Myasthenia Gravis Foundation of America
  • Christeen Moburg, Senior Director, Patient Advocacy, Sangamo
  • Karen M. Morales, Associate Director of Engagement, The PATIENTS Program, PHSR, University of Maryland School of Pharmacy
  • Jessica Riviere, Senior Director of Patient Advocacy, Biogen
  • Susan Stone, Executive Director, Alliance Advocacy, Allergan, & Board Member, Allergan Foundation
  • Keri Yale, Director of Patient Advocacy and Professional Relations, External Affairs, Boehringer-Ingelheim Pharmaceuticals

For more information on this project, please contact Silke Schoch, Manager, Research & Programs.

Sponsors include: Biogen, Celgene, Grifols, Patient Focused Medicines Development, and Servier