Patients and family caregivers are contributing to an ever-widening array of roles and activities as part of the growing patient engagement movement. In Canada, the role of patient partners and advisors, in particular, has grown in popularity and is supported by legislation, provincial frameworks and major organizational and strategic initiatives across the country. Through these roles, patients and family members are contributing, for example, to research and quality improvement, health services planning and design, and the evaluation of health technologies and related policy-making, yet our understanding of this growing community of partners and advisors is limited.
The aim of this research is to gain an in-depth understanding of the patient partner and advisor role as an emerging resource to the Canadian health system. We will describe, map and explore the community of patient partners and advisors across the country, assess the prospects for this role to contribute to health system decision making and policy, identify the challenges it faces and how these might be addressed.
The Canadian Patient Partner Study is funded by the Canadian Institutes of Health Research (CIHR) through a project grant.
We are currently in Phases 1 and 2 of the study. We are conducting a systematic review of the literature on patient partner roles and a survey of patient partners and advisors across Canada.
Our team brings together the necessary research, policy, health system, clinical and patient expertise from across Canada to tackle this project in a uniquely rigorous and creative way.