Fair Compensation for Patient Partners

Engaging patient partners in clinical trial design is becoming more common as patient advocates, funders and others are encouraging research teams to design studies that reflect greater patient centricity, enhanced generalizability of results, and with outcomes of relevance to patients and providers. However, a gap in guidance for fair compensation practices for patient engagement in NIH-funded clinical trials remains. Patient partners are people with a disease or condition who are involved in clinical trial planning, conduct, and dissemination of results. Patient engagement is the collaborative interaction between patient partners and researchers to plan and design clinical trials.

This study aimed to interpret perspectives from patient partners and clinical trial researchers about compensation practices for patient engagement, analyze emerging themes to inform creation of a Points to Consider tool. The Knowledge-to-Action framework was used to guide the knowledge inquiry, synthesis and dissemination of this research. Data were collected from patient partners and clinical trial researchers via semi-structured interviews. Five themes emerged from qualitative analysis that informed the creation of a draft Points to Consider webpage for Practices to Support Fair Compensation for Patient Engagement in Clinical Trials. Perceptions from organizational administrators about the usability and feasibility of the webpage were collected and used to inform a revised version of the webpage. The purpose of the Points to Consider webpage is to facilitate knowledge dissemination to research teams about fair compensation practices for patient engagement in NIH-funded clinical trial planning.