Grant: Project Grant

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. We will carry out our work through research and knowledge translation activities that include: i) a synthesis of empirical and theoretical literature about patient partner and advisor roles; ii) a survey of the networks of patient partners and advisors across the county; and iii) in-depth interviews to explore in more detail the motivations and experiences of patient partners and advisors and the partner organizations they join. Findings from these research phases will be used to generate an in-depth understanding of the patient advisor/partner role and its prospects for contributing to health system decision making and policy in Canada. The research will be carried out in collaboration with a multidisciplinary team of researchers and patient advisors who bring the complementary theoretical, experiential and methodological perspectives that will be needed to address this topic.