Patients, care partners, and patient groups involved in patient engagement activities should be compensated as lived experience experts. Over the years, as more patient voices in research have emerged, various levels of expertise have also evolved. What should you pay these engagement partners for participation in your project?
- 2019: National Health CouncilThe National Health Council provides a united voice for the 160 million people living with chronic diseases and disabilities and their family caregivers. nationalhealthcouncil.org (United States) publishes a Fair-Market Value (FMV) Calculator to determine compensation based on level of expertise. View Patient Engagement Activities Framework document guide .
- 2018: Canadian Arthritis Patient Alliance (CAPA)Canadian Arthritis Patient Alliance (CAPA) works to improve access to medications, health care professionals, and services, Increase patient involvement in arthritis research and policy agendas, and understand and influence research and treatments. arthritispatient.ca and the Rare Disease FoundationRare Disease Foundation is led by rare disease patients, caregivers, researchers, and practitioners who share the same sense of urgency and values about access to resources and research for rare disease patients and their families. rarediseasefoundation.org (Canada) defining core principles behind compensation, outlining how to put those principles into practice in a valid, credible manner that honors and values the contributions of patients and families whether in quality improvement or health research.
- 2020: Canadian Arthritis Patient Alliance (CAPA) and the Rare Disease Foundation (Canada) publish additional practical recommendations related to compensation for Patient Research Partners (PRPs).
- Some groups, like Outcome Measures in Rheumatology (OMERACT)Outcome Measures in Rheumatology (OMERACT), is a global community for the development of Core Outcome Sets in the field of rheumatology. Patients participate as research partners in all phases of the research and are equal members in any OMERACT working group. omeract.org, omeractprpnetwork.org, are all volunteer organizations. In these cases, when other stakeholders are also donating their time, it is acceptable to expect patient partners to donate their time, too.
CoPI: Patient Research Partners
Tools: Recommendations – compensation