Monika Novak-Pavlic, CanChild Centre for Childhood Disability Research, School of Rehabilitation Science, McMaster UniversityFollow
Jan Willem Gorter, CanChild Centre for Childhood Disability Research and Department of Pediatrics, McMaster University; UMC Utrecht Brain Center, University Medical Center UtrechtFollow
Michelle P. Phoenix, CanChild Centre for Childhood Disability Research, School of Rehabilitation Science, McMaster UniversityFollow
Samantha K. Micsinszki, CanChild Centre for Childhood Disability Research, School of Rehabilitation Science, McMaster UniversityFollow
Kinga Pozniak, CanChild Centre for Childhood Disability Research, McMaster UniversityFollow
Lin Li, School of Nursing, McMaster UniversityFollow
Linda Nguyen, CanChild Centre for Childhood Disability Research, School of Rehabilitation Science, McMaster UniversityFollow
Alice K. Soper, CanChild Centre for Childhood Disability Research, School of Rehabilitation Science, and Department of Pediatrics, McMaster UniversityFollow
Elaine Yuen Ling Kwok, CanChild Centre for Childhood Disability Research, McMaster UniversityFollow
Jael N. Bootsma, CanChild Centre for Childhood Disability Research, School of Rehabilitation Science, McMaster UniversityFollow
Francine Buchanan, SickKidsFollow
Hanae Davis, CanChild Centre for Childhood Disability Research, McMaster University; University Health NetworkFollow
Sandra Abdel Malek, CanChild Centre for Childhood Disability Research, School of Rehabilitation Science, McMaster UniversityFollow
Karen M. van Meeteren, OuderInzichtFollow
Peter L. Rosenbaum, CanChild Centre for Childhood Disability Research and Department of Pediatrics, McMaster UniversityFollow

patient engagement, family involvement, health research, partnership, compensation

Patient and family engagement has become a widely accepted approach in health care research. We recognize that research conducted in partnership with people with relevant lived experience can substantially improve the quality of that research and lead to meaningful outcomes. Despite the benefits of patient-researcher collaboration, research teams sometimes face challenges in answering the questions of how patient and family research partners should be compensated, due to the limited guidance and lack of infrastructure for acknowledging partner contributions. In this paper, we present some of the resources that might help teams to navigate conversations about compensation with their patient and family partners and report how existing resources can be leveraged to compensate patient and family partners fairly and appropriately. We also present some of our first-hand experiences with patient and family compensation and offer suggestions for research leaders, agencies, and organizations so that the health care stakeholders can collectively move toward more equitable recognition of patient and family partners in research.

Novak-Pavlic M, Gorter JW, Phoenix, MP, Micsinszki SK, Pozniak K, Li L, Nguyen L, Soper AK, Kwok EYL, Bootsma JN, Buchanan F, Davis H, Abdel Malek S, van Meeteren KM, Rosenbaum P. Patients and families as partners in patient-oriented research: How should they be compensated? J Patient Cent Res Rev. 2023;10:82-90.

April 18th, 2022

August 17th, 2022