Paying Patients for Their Expertise: What is Fair?

Marc Boutin
Chief Executive Officer

National Health Council


atients, their caregivers, and patient organizations are eager to provide their expertise and experience to improve the medical product development process so that these products better meet their wants and needs. But when patients provide their input into the development of products and treatments, how should they be fairly compensated for their time and expertise?

Companies are struggling with establishing what is appropriate and acceptable compensation. They need the patient perspective so that the treatments and products they develop will be used by patient communities; they also want to fairly demonstrate the value they place on patients and patient group expertise. Many company compliance and legal departments are in a quandary over what to do. Similarly, patients and patient groups do not know what to charge.

To answer this question, the National Health Council (NHC) has embarked on a project to develop a tool—typically referred to as the Fair Market Value (FMV) Calculator—that would help calculate fair payment for patients and patient organizations. The goal of the project is to ensure that all stakeholders confidently enter into ongoing, compliant, and sustainable engagement efforts to effectively drive healthcare innovation based on patient insights in a trustworthy and meaningful manner.

This project aims to produce resources that support engagement between industry stakeholders and the patient community as part of medical product development by:

  • developing an FMV Calculator for compensating patients and patient groups;
  • adapting conflict-of-interest and privacy principles, based on the EU Patient Focused Medicines Development (PFMD) initiative, for use in the US; and
  • adapting European contract templates for use in the US.

The NHC will engage stakeholders throughout the life of the project, including patient advocacy organizations, medical product companies (such as biopharmaceutical, diagnostic, and device companies), trade associations, government agencies, research organizations, and other relevant parties. Their input will be collected via in-person meetings, virtual collaboration, and targeted interviews and focus groups.

The patient FMV Calculator program will be guided by a multi-stakeholder Steering Committee that will include sponsors, patients, and content experts. The Steering Committee will meet in person, by teleconference, and online to provide guidance on all activities undertaken as part of the project. We will also create a Project Review Committee that will review all project materials as they are developed.

As part of an environmental scan, we will conduct research and stakeholder outreach to understand, analyze, and document all relevant stakeholder interests in tools for sustainable patient engagement agreements, as well as relevant compliance and regulatory considerations that will shape the design and development of the tools.

The NHC will also conduct a gap analysis to identify additional complementary or accompanying tools that could aid the development of sustainable patient engagement agreements. These will serve as an independent resource and guide for potential next steps to further enhance patient engagement.

As a result of this project, we hope that patient advocates and advocacy organizations will be fairly compensated for their time and expertise and that industry stakeholders will be able to develop products and treatments that truly meet the wants and needs of patients.

If you are interested in learning more about how you or your organization can get involved in the NHC FMV Calculator project, please contact us via email.