When planning to partner with PFACs and PFAs on research projects, researchers have to think about appropriate reimbursement for expenses needed to participate and compensation that acknowledges the contribution they make to a study. This is often required by funders, but even if it is not, it should be included in research proposal budgets.

Compensation will depend on the level of involvement of PFACs and PFAs. Types of compensation include:

  • Token of Appreciation – gift cards, meals, support for meeting attendance (e.g., transportation, parking, child care or respite care).
  • Stipend or Honorarium – may be calculated based on hourly or daily participation or as a one-time project specific honorarium.
  • Payment – if a PFA serves a significant role on the research team, he or she should be paid at a level appropriate for other research team members serving in a similar role or level of effort.

Researchers should recognize that sometimes compensation cannot be accepted by PFACs and PFAs. For instance, PFACs that are within state or public health care systems may not be able to accept honoraria or other payments because of rules and regulations. Some PFAs cannot accept honoraria or payments because of disability regulations. It is important to find this out when planning your project and work with the organization to identify other ways to recognize the contributions of PFACs and PFAs.

Reimbursement should always be provided for out-of-pocket expenses that PFAs incur due to their participation. This includes such things as transportation (bus, taxi, gas, mileage), parking, and child or respite care. Researchers can ask Staff Liaisons for recommendations and coordinate with them.

Tools and Resources

The Patient-Centered Outcomes Research Institute offers guidance for providing compensation in the resource, Financial Compensation of Patients, Caregivers, and Patient/Caregiver Organizations Engaged in PCORI-Funded Research as Engaged Research Partners.