A Framework for Financial Compensation for Patient Partners in Research

Patients, caregivers, and their advocates provide invaluable contributions to activities both here at PCORI and in the studies we fund. In fact, we require that patients and other healthcare stakeholders be partners in the research team, designing and conducting the projects that we support. This new collaborative approach introduces opportunities to redefine the way research is done, anchored in the concept of partnership as described in the PCORI Engagement Rubric.

One partnership issue—something we’ve heard a lot about from patients and researchers alike—is how to recognize the value of the time and efforts patients offer. Previously, PCORI had advised that patients’ contributions as true research partners be recognized accordingly. Now we are excited to provide a Framework on Compensation, created by the Advisory Panel on Patient Engagement in collaboration with PCORI staff that we hope will provide additional helpful guidance.

Members of PCORI’s Engagement team and of the advisory panel searched extensively for existing payment or compensation models but found nothing that squarely fit our needs. Many of the current models were focused on payment for research participants rather than research partners. Other models were adapted from fields other than research.

Ultimately, we decided that we needed to develop a new framework. After much dialogue and hard work, we are happy to provide this tool to our applicants and other members of the PCOR community.

The new document provides a framework for thinking about financial compensation of research partners who are patients, caregivers, or representatives of patient or caregiver organizations. We expect that any research proposal submitted to PCORI will include a plan and related budget for compensating such partners. Although the new framework does not provide specific direction on payment amounts or modes of payment, it outlines factors to consider when budgeting. It illustrates how the nature and amount of compensation should reflect the circumstances and contributions of the research partners.

We hope you find this framework interesting and useful, and we’d appreciate your comments on how we might improve it. Please contact us at [email protected].