A Framework to Ensure Patient Partners Have Equal and Contributing Voices Throughout the Research Program Evaluation Process

Abstract

Purpose of program: Traditionally, peer review was a closed process conducted only by individuals working in the research field. To establish a more integrated and patient-centered approach, one of Canada’s largest kidney research networks (Can-SOLVE CKD) has created a Research Operations Committee (ROC) that includes patients as key members. The ROC represents one way for achieving meaningful patient-oriented research (POR). Source of information: Can-SOLVE CKD, a network created as part of the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR). Methods: The ROC consists of patients, physicians, scientists, Indigenous partners, experts in research methodology, and a member of Can-SOLVE CKD’s operational team. On an annual basis, Can-SOLVE CKD’s research teams provide the ROC with a review package, which incorporates information from patient engagement check-in calls and surveys, the project’s knowledge translation plan and products, and a progress report written by the project team. The ROC evaluates the review package and provides feedback and recommendations accordingly. Key findings: The transparent nature of the process, regular feedback and review, along with an overt accountability and scoring system, has been embraced by both patients and researchers. As a result of the ROC process, the number of patient leads for each project has grown over a 3-year period and more researchers have received POR and cultural sensitivity training. Limitations: While anecdotal evidence suggests this approach is beneficial for achieving POR, formal mechanisms of evaluation are currently lacking. Implications: This ROC framework ensures patients are active contributors throughout the research process and could be adopted by other organizations to achieve a more patient-centered approach to research.

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.…”

Primus Inter PARES: First among equals—practical strategies for young adult PAtient RESearch partners (PARES) by young adult PARES

“…If this trend continues unchecked and unaddressed, we risk witnessing the erosion of authentic participatory research, leaving it as a relic within academic echo chambers, disconnected from the communities it was meant to serve. Hillier et al [ 24 ] confirm as POR becomes more mainstream, there is a necessity for clear mechanisms to support the inclusion of PARES in health research.…”