Patient Compensation Tools

Patient Engagement Activities Framework

This document is a guide to gathering the data and assumptions necessary to use the fair-market value calculator.

Fair-Market Value (FMV) Calculator

This online FMV calculator can be used to determine compensation for patients, caregivers, and patient groups involved in “patient engagement activities” taking place between patient organizations and/or unaffiliated patients, and private companies. Troubleshooting: The browsers that work best with this tool are Chrome and Safari. If you are still experiencing difficulties please reach out to us at [email protected] with questions.

Principles for Compensation

These principles provide general guidance regarding compensating patient-community representatives for their time and expertise when participating in patient-engagement activities.

Read more about this project on the Putting Patients First Blog.
  • Kate Avery, MPH, Director of Research and Patient Engagement, Beyond Celiac
  • John Boyle, MA, (and Lynn Albizo), President & CEO, Immune Deficiency Foundation
  • Nicholas Brooke, Founder & Executive Director, Patient Focused Medicines Development
  • Barbara Collura, President & Chief Executive Officer, RESOLVE: The National Infertility Association
  • Louisa M. Daniels, JD, MBA, 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 & Katherine Capperella, Global Patient Engagement Leader, Janssen Pharmaceuticals, Johnson & Johnson
  • Jan Nissen, MBA, Vice President, Patient Innovation & Engagement, Merck
  • Amber Spierer, MPH, 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, PhD, Vice President, Evaluation & Patient Experience, Patient Advocate Foundation
  • Julie Eller, Director, Patient Centered Strategies, Arthritis Foundation
  • Jason Harris, Director, Public Policy, Lupus Foundation of America
  • Chris Healey, JD,President, Grifols Shared Services North America, & Vice President, Public Affairs, Grifols
  • Nancy Law, Chief Executive Officer, Myasthenia Gravis Foundation of America
  • Kristi Lengyel, MBA, Director of Patient Advocacy, & Global Healthcare System Strategy Lead Bone Mission, UCB & Courtney George, Compliance Manager, UCB, Inc.
  • Christeen Moburg, Senior Director, Patient Advocacy, Sangamo
  • Karen M. Morales, Associate Director of Engagement, The PATIENTS Program, PHSR, University of Maryland School of Pharmacy
  • Susan Stone, MBA, Associate Vice President, Alliance Advocacy & Patient Affairs; Board Member, The Allergan Foundation; Trustee, Allergan International Foundation
  • Keri Yale, MBA, Director of Patient Advocacy and Professional Relations, External Affairs, Boehringer-Ingelheim Pharmaceuticals

Read about the project objectives here.

Watch Eleanor Perfetto, PhD, MS, Executive Vice President of Strategic Initiatives, and Silke Schoch, Manager, Research & Programs, present the NHC’s Patient Engagement Fair Market Value (FMV) Calculator Toolbox on Friday, June 26 during the Patient Focused Medicines Development (PFMD) Patient Engagement Open Forum.

Acknowledgement: Special thanks to members of our Steering and Review Committees, our sponsors. We also thank Ankura and Faegre Drinker Biddle & Reath, LLP who assisted us during this project.

Sponsors include Allergan, Biogen, Boehringer Ingelheim, Celgene, Grifols, Patient Focused Medicines Development, Sangamo, Servier, UCB, Merck, Novartis, Johnson & Johnson, Pfizer, People-Centered Research Foundation

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