Patient Engagement Compensation and Contracting Toolbox

The NHC and our partners have developed tools to assist all stakeholders to 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. 

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.

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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