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Health Expect. 2018 Dec;21(6):1142-1149. doi: 10.1111/hex.12818. Epub 2018 Aug 15.

Long-term views on chronic kidney disease research priorities among stakeholders engaged in a priority-setting partnership: A qualitative study.

Author information

1
Department of Medicine, University of Calgary, Calgary, AB, Canada.
2
Department of Community Health Sciences, University of Calgary, Calgary, AB, Canada.
3
Li Ka Shing Knowledge Institute, St. Michael's Hospital, Toronto, ON, Canada.
4
Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, ON, Canada.
5
Hotchkiss Brain Institute, University of Calgary, Calgary, AB, Canada.
6
Canadian Arthritis Patient Alliance, Toronto, ON, Canada.
7
Department of Medicine, University of Toronto, Toronto, ON, Canada.

Abstract

BACKGROUND:

Patients and stakeholders are increasingly engaging in health research to help address evidence-practice gaps and improve health-care delivery. We previously engaged patients, caregivers, health-care providers (HCPs) and policymakers in identifying priorities for chronic kidney disease (CKD) research.

OBJECTIVE:

We aimed to explore participants' views on the research priorities and prioritization process 2 years after the exercise took place.

DESIGN:

In this qualitative descriptive study, individual interviews were conducted and analysed using an inductive, thematic analysis approach.

SETTING/PARTICIPANTS:

Participants resided across Canada. We purposively sampled across stakeholder groups (CKD patients, caregivers, HCPs and policymakers) and types of engagement (wiki, workshop and/or steering committee) from the previous CKD priority-setting project.

RESULTS:

Across 23 interviews, participants discussed their research priorities over time, views on the prioritization process and perceived applicability of the priorities. Even though their individual priorities may have changed, participants remained in agreement overall with the previously identified priorities, and some perceived a distinction between patient and HCP priorities. They tended to balance individual priorities with their broader potential impact and viewed the prioritization process as systematic, collaborative and legitimate. However, participants acknowledged challenges to applying the priorities and emphasized the importance of communicating the project's outcomes upon its completion.

CONCLUSION:

Two years after engaging in CKD research prioritization, stakeholder participants remained in agreement with the previously identified priorities, which they felt reflected group deliberation and consensus. Rapport and communication were highlighted as key elements supporting effective engagement in research prioritization.

KEYWORDS:

chronic kidney disease; patient engagement; patient-oriented research; qualitative research; research priorities

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