Abstract
BackgroundPatients 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.ObjectiveWe aimed to explore participants' views on the research priorities and prioritization process 2 years after the exercise took place.DesignIn this qualitative descriptive study, individual interviews were conducted and analysed using an inductive, thematic analysis approach.Setting/participantsParticipants 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.ResultsAcross 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.ConclusionTwo 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.
Highlights
Chronic kidney disease (CKD), characterized by persistently abnormal kidney function, affects up to 13% of the population globally[1] and is associated with considerable morbidity, mortality and health- care costs.[2]
In 2015, we used the approach established by the James Lind Alliance (JLA) to identify the most important, unanswered questions about chronic kidney disease (CKD) management among CKD stakeholders, including adult patients with non-dialysis CKD, their caregivers, and health-care providers (HCPs) and policymakers involved in CKD care.[10,11]
We found that stakeholders from a CKD research priority-setting exercise remained in agreement with the priorities identified 2 years previously, even though their individual priorities may have changed in the interim in relation to their own experiences
Summary
Chronic kidney disease (CKD), characterized by persistently abnormal kidney function, affects up to 13% of the population globally[1] and is associated with considerable morbidity, mortality and health- care costs.[2]. Caregivers, health-care providers (HCPs) and policymakers in identifying priorities for chronic kidney disease (CKD) research. 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.
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