Background: “Fair-market value” (FMV) calculators are tools traditionally used by industry to ensure the compensation rates they are using when engaging doctors, researchers, and other outside experts are both competitive and compliant with regulations. These methods for determining appropriate compensation for clinicians and researchers are not applicable for patients, as many were originally created for HCPs, using qualifications only applicable to HCPs. Based on patient group and industry member feedback that an alternative process for determining FMV for patient engagement was needed, the National Health Council (NHC) set out to develop a patient-specific FMV calculator.

Methods: To oversee development of the FMV calculator, we assembled a Steering Committee and Review Committee in early 2019 to oversee development. Inputs into development of the calculator included: 1) insights from 60 interviews with patient-group staff, compliance staff within industry, and others with significant experience engaging patients; 2) benefits and compensation survey data from nine unique; 3) and input/survey data from PFMD- and WECAN-led initiatives.

Results: A comprehensive list of patient engagement variables, including “types of patients” (e.g., individuals, patient group representatives), patient engagement activities (e.g., advisory board participation, being shadowed by a researcher) was developed. Corresponding FMV hourly rate ranges were derived based on survey data and agreed upon by Steering/Review Committee members. An online, interactive calculator was developed/revised iteratively and beta-tested by patient and industry staff. The publicly available, interactive calculator was completely and released publicly in June 2020. The calculator is currently being adapted by PFMD for use in Europe.

Conclusion: The NHC’s 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. Use of the calculator can ensure patients are fairly compensated and promote consistency across companies.