A new Fair Market Value tool will help to calculate appropriate fees for patients involved in drug development, writes Gary Finnegan

Compensating patient advocates for their time and expertise is vital to the advancement of patient engagement in drug development. To deepen understanding of the key issues in determining the value patients bring to the table, PFMD conducted a survey of stakeholders and is working with key actors to devise and share new solutions. In this series of interviews, we speak to representatives of patients and industry on how they are moving the field forward.

The US-based National Health Council has devised a Patient Engagement Fair-Market Value Calculator to calculate reimbursement rates for patients and patient advocates. We asked Marc Boutin, CEO of the NHC, to explain how the tool will be used in practice.

What is the US Patient Engagement Fair-Market Value Calculator and why is it needed?

Fair-Market Value (FMV) calculators are tools traditionally used to ensure the compensation rates industry uses when engaging doctors, researchers, and other outside experts are both competitive and compliant with regulations.

 These methods for calculating appropriate rates for clinicians and researchers are not appropriate for setting rates for patients involved in patient-focused drug development. Therefore, based on feedback from our members that an alternative process for determining fair compensation for patient engagement was needed, the National Health Council (NHC) set out to develop a patient-specific FMV calculator.

Can it be applied in other parts of the world?

The rates for the NHC-developed calculator will be based on US dollars and local US wage rates and compensation policies. So, it cannot be applied directly but could be adapted for use in other countries. In fact, we hope that will happen in collaboration with Patient Focused Medicines Development (PFMD), which is based in Europe.

How do you see this calculator being used within various organisations?

This project aims to support sustainable agreements between the industry and the patient and caregiver communities as part of medical product development. The FMV calculator will be designed to help determine the compensation of patients (and caregivers/family members) and patient groups involved in ‘patient engagement activities’ taking place between patient organisations and/or unaffiliated patients and private companies.

The final calculator product is something companies can adapt and further customise for their own needs. The calculator will also include building blocks, such as an engagement activities list and principles, as well as patient-friendly conflict-of-interest policies and contract templates.

What is the link with the Reasonable Agreements initiative?

Myeloma Patients, WECAN, and PFMD are developing standard, patient-friendly legal contract templates for use by patient organisations and industry in Europe. The NHC will adapt those templates for an American audience. Like our European colleagues, we’ve found that lengthy and overly broad legal documents are a barrier to meaningful patient engagement.

How has the patient voice been captured by the FMV calculator?

What makes our process unique, is that we’ve engaged the multi-stakeholder membership of the NHC, including the patient advocacy community, from the very beginning to develop an FMV calculator that will fairly compensate a patient, recognising their expertise and experiences as someone living with a condition. We are also working in collaboration with our colleagues in Europe, to ensure useful tools are available on both sides of the Atlantic.