Introduction
As patient engagement has evolved, a range of longitudinal collaborative partnerships between patients, family caregivers, and health systems decision-makers has emerged. These roles carry many different labels, and there is no consensus on definitions or terminology. The objective of this study is to propose empirically-based role definitions to describe longitudinal partnerships between people with lived experience and health systems.
Methods
We analysed survey and interview data to examine how patient partnership roles are defined by those with lived experience engaged in longitudinal partnerships with Canadian health organizations (
n
= 603 survey respondents,
n
= 35 interviewees), and by staff and decision-makers in those organizations (
n
= 25). Through inductive analysis, we identified key elements, sources of variation and terminology considerations, developing a typology of roles to describe the concept of “patient partner”.
Results
In our typology of roles, “Partner” could describe those deeply embedded in organizations, who participate actively in decision-making on multiple issues, representing both their own lived experience and the priorities of a broader community. We suggest “Advisor” to describe members of networks who engage episodically on multiple projects over time, offering perspective and input when requested, drawing mainly on their own lived experience. Working within and outside the health system, “Advocate” could define those who work independently to achieve particular outcomes, sometimes by disrupting dysfunction in the healthcare system. We offer “Mentor” to express the role of supporting other patients in their health or engagement journeys based on one’s own lived experience.
Discussion
The proposed terms and definitions will be useful to describe the diverse activities and approaches of longitudinal collaboration. These can be used as the starting point in dialogue within and between patient partners and organizations to create engagement-specific role definitions, and to clarify the expectations, responsibilities, and intended outcomes of engagement. We present these definitions for clarity, without endorsing any particular form of engagement.
