Engaging indigenous patient partners in patient-oriented research: lessons from a one-year initiative

BACKGROUND: Patient-oriented research (POR) is a specific application of participatory research that promotes active patient engagement in health research. There is a growing concern that people involved in POR do not reflect the diversity of the population such research aims to serve, but are rather those more ‘easily’ engaged with institutions, organizations and society. Indigenous peoples are among such groups generally underrepresented in POR. The “Indigenous patient partners platform project” was a small-scale initiative aimed to address the issue of the underrepresentation of Indigenous people in patient-oriented research by recruiting, orienting and supporting Indigenous patient partners in Québec (Canada). This article reports on the findings of an evaluation conducted at the end of the project to garner lessons and identify strategies for engaging Indigenous patient partners in patient-oriented research. METHODS: The evaluation of this initiative used a case study design hinging on documentary analysis and committee member interviews. Project documents (n = 29) included agendas and meeting minutes, support documents from the orientation workshop and workshop evaluations, and tools the committee developed as part of the project. Interview participants (n = 6) were patients and organizational partners. Thematic analysis was performed by two members of the research team. Patient partners actively contributed to validating the interpretation of result and knowledge translation. RESULTS: Results point to four key components of Indigenous patient partner engagement in POR: initiation of partnership, interest development, capacity building and involvement in research. Specific lessons emphasize the importance of community connections in recruiting, sustaining and motivating patient partners, the need to be flexible in the engagement process, and the importance of consistently valuing patient partner contributions and involvement. CONCLUSIONS: There is a need to engage Indigenous patient partners in POR to ensure that healthcare practices, policies and research take their particular needs, stories and culture into account. While results of this evaluation are generally consistent with the existing literature on patient engagement, they offer additional insight into how to effectively engage Indigenous patient partners in research, which might also be relevant to the involvement of other marginalized populations who have been historically and systemically disempowered.