The Role of Patient Advisory Councils in Health Research: Lessons From Two Provincial Councils in Canada

Abstract

This article describes two patient advisory councils (PACs) in Canada in order to contribute to the limited evidence base on how they might facilitate patient engagement in health research. Specifically, members of PACs from Newfoundland and Labrador and Alberta describe their councils’ governance structure, primary functions, creation and composition, and recount specific research-related activities with which they have been involved. Key challenges of these councils and facilitators of their use are also presented. Finally, members from both councils recount lessons learned and offer suggestions for others interested in advisory councils as a mechanism for patient engagement in any health research project. Members believe patient engagement can result in better quality research and encourage decision makers and researchers to utilize patients’ valuable input to inform health system changes and drive priorities at a policy level.

Public Interest Group on Cancer Research: a successful patient–researcher partnership in Newfoundland and Labrador

“…The discussions and activities of the group are therefore informed by a diverse, rich representation. While members from urban areas of the province were over-represented, and as observed in other committees [ 1 ], men have been slightly under-represented, the group has had a good representation in terms of cancer sites (more than 14 different sites as well as select common and rare cancers being represented); hereditary versus sporadic cancers; cancer patient and family members; ethnicity (i.e., white, Indigenous, Asian); self-identified disability status; and the age groups (between 18 and 65+ years of age). In the 2nd year, we did not have representation from Labrador—efforts to integrate these perspectives in the group are ongoing.…”

“…Recent years have witnessed a growing emphasis on patient-oriented research (POR), patient and public engagement (PE) and outreach [ 1 – 3 ].…”

Patient-partner engagement at the Centre de recherche du CHUS in the Province of Québec, Canada: from an intuitive methodology to outreach after three years of implementation

“…Our knowledge of the existing literature suggests that while conceptual data exists suggesting the “why’s” and “how’s” to engage patients in research [ 29 – 33 ], sparse initiatives have published on the impact their patient engagement structure exerted on researchers, patients and the different stakeholders involved. Of these few initiatives, the PACER initiative, two patient advisory councils in Canada (Newfoundland/Labrador and Alberta [ 34 ], the Can-SOLVE CKD Research Operations Committee [ 35 ]. Manchester/England Public Programmes Team [ 36 ] must be mentioned as it proposes models of interdisciplinary public-practice oriented professionals to support public and patient engagement in health research.…”

Identifying best approaches for engaging patients and family members in health informatics initiatives: a case study of the Group Priority Sort technique

“…This is evident through the inclusion of additional items that were identified outside the literature review. For example, as healthcare organizations and provinces begin to form patient and family advisory councils [34], establishing proper governance structures that recognize and mitigate power dynamics would be of value. The collective identification of these needs from local stakeholders encourage local ownership of the findings which can be useful in encouraging the translation of results to practice [35].…”