Fair Market Value Calculator Steering Committee

  • Kate Avery, Director of Research, Beyond Celiac
  • John Boyle (and Lynn Albizo), President & CEO, Immune Deficiency Foundation
  • Barbara Collura, President & Chief Executive Officer, RESOLVE
  • Tracy Hart, Chief Executive Officer, Osteogenesis Imperfecta Foundation
  • Louise Vetter , President & Chief Executive Officer, Huntington’s Disease Society of America
  • Ellen Ivey, National Advocacy Policy Director, Strategic Customer Group, Oncology, Solid Tumor, Johnson & Johnson

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

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

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:

Glossary of Patient Engagement Terms

Glossary of Patient Engagement Terms


The definitions of these terms, which includes Family Caregiver, Meaningful Engagement, and Patient-Focused Drug Development, stem largely from our patient engagement work, including our ‘Patient-Focused Drug Development -  Recommended Language for Use in Guidance Document Development’ Paper with Genetic Alliance, as well as our Value Rubric, and Representativeness Rubric.


Lessons Learned from a Patient Group’s Experience Developing a PRO

May 14, 2019 - This webinar featured Dory Kranz, President & CEO of the National Alopecia Areata Foundation. In this webinar, you will learn about a case study of the process that a patient advocacy group goes through as they develop a patient reported outcome (PRO) measure. 

Science of Patient Engagement Symposium

The annual National Health Council (NHC) Science of Patient Engagement Symposium for medical, scientific, and research leaders is a two-day meeting held in the fall each year in Washington, DC. This meeting focuses on the science of patient engagement and was formerly called the Chief Medical/Science Officers Conference. Research leaders share - with a broad scientific audience - their experiences, accomplishments, best practices, and resulting impacts on medicine and science regarding patient centricity.


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