The lack of a transparent and consistent system in place for financial compensation that reflects the level of individual contribution and expertise of patient partners is finally being addressed, heard the Patient Engagement (PE) Open Forum

In what was a very topical presentation, a session focused on Fair Market Value (FMV) of Engaging Patients took place at the PE Open Forum, co-presented by Eleanor Perfetto, Executive Vice President Strategic Initiatives at the National Health Council, Nicholas Brooke from Patient Focused Medicines Development (PFMD) and Michaela Dinboeck from Novartis. The session included an introduction and the rationale for the National Health Council (NHC) compensation project, as well as an overview and update.

Attendees learned that “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. For example, one doctor’s rates might be higher than another’s, perhaps because they have additional academic degrees or a particular medical speciality. Yet these methods for calculating appropriate rates for clinicians and researchers are not appropriate for setting compensation rates for patients involved in patient-focused drug development. 

Based on patient group and industry member feedback that an alternative process for determining FMV for patient engagement was needed, the NHC set out to develop a patient-specific FMV calculator, and the process was outlined by Eleanor Perfetto.

These efforts are global in nature; the NHC has developed a transatlantic collaboration with PFMD and WECAN to ensure alignment between the NHC FMV Project and PFMD and WECAN projects. This collaboration includes PFMD representation on the NHC Steering Committee and adapting deliverables to suit American and European audiences. 

Overall, the NHC aims to develop three key deliverables at the end of this project: an FMV Calculator for patients/patient groups, principles for compensation/reimbursement, and contract and conflict-of-interest templates.

“In developing our FMV Calculator, we are focusing on collecting market compensation data for positions requiring similar skills, defining the breadth of patient engagement activities to be captured, and using US market rates collected from our members. We also want our FMV Calculator to be easy to use and not be built using expensive or proprietary software,” commented Perfetto.

An FMV project consultant with FMV calculator expertise supported the work, she explained. Perfetto also outlined how the NHC developed interview guides to gather information from patient-group staff, compliance staff within the industry, and others with significant experience engaging patients. “Interviews were conducted and we gleaned many useful insights,” she said.

Currently, the NHC is working to distil the data, insights, and input into an Excel-based FMV calculator to guide compensation for patients and patient groups when engaging with companies and others. The session heard that the FMV calculator will be ready for beta testing before the end of 2019. 

In addition, corresponding principles for compensating patients for engagement activities are currently under review and should be released soon. This includes principles for describing the type of patient-engagement participant, general compensation principles, administrative/logistical principles, time commitment, travel and reimbursement considerations, declining compensation, among other considerations. 

The NHC is also developing contract templates and is working with PFMD and WECAN to leverage EU templates that are in process.