Perceived Significance of Engagement in Research Prioritization Among Chronic Kidney Disease Patients, Caregivers, and Health Care Professionals: A Qualitative Study

Abstract

Background:Patients and other stakeholders are increasingly engaging as partners in research, although how they perceive such experiences, particularly over the long term, is not well understood.Objective:To characterize how participants from a nondialysis chronic kidney disease (CKD) research priority-setting project conducted 2 years previously perceived the significance of their involvement.Design:Qualitative descriptive study with semi-structured, individual interviews.Setting:Participants resided across Canada.Participants:Eligible participants included stakeholders (ie, patients with nondialysis CKD, caregivers, health care professionals, and policy makers) who had taken part in a prior CKD research priority-setting project.Measurements:We explored stakeholder experiences and perspectives on engagement in CKD research prioritization.Methods:We purposively sampled across stakeholder roles and engagement types (ie, involvement in the priority-setting workshop, wiki online tool, and/or steering committee). All interviews were conducted by a single investigator by telephone or face-to-face, and audio-recordings were transcribed verbatim. The data were inductively coded and analyzed by 2 investigators using a thematic analysis approach.Results:We conducted 23 interviews across stakeholder roles and engagement types. Participants appreciated the integration of distinct stakeholder communities of patients, researchers, and health care professionals that occurred through engagement in research priority setting. Their opportunity to interact with patients and others directly impacted by CKD outside of the clinical setting contributed to an enhanced understanding of the CKD lived experience and value of patient-oriented research. This interaction helped participants refine and refocus their commitment to patient-centered CKD care and research, characterized by enhanced knowledge and confidence (patients/caregivers), adaptations to existing clinical practices and policies (health care providers/policy makers), and subsequent research engagement.Limitations:The views of participants may not reflect those of individuals in other research or health care settings.Conclusions:Stakeholder engagement in nondialysis CKD research prioritization encouraged the integration of stakeholder communities, an appreciation of the CKD experience, and a refocusing of participants’ commitment to research and care. Findings highlight considerations for future health research engaging stakeholders, particularly those living with CKD, as research partners.

Patients as partners in health research: A scoping review

“…After duplicates were removed (n = 1521), 6684 records were screened, and 979 records were selected for full‐text review. A total of 78 academic/peer‐reviewed articles 10 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 , 65 , 66 , 67 , 68 , 69 , 70 , 71 , 72 , 73 , 74 , 75 , 76 , 77 , 78 , 79 , 80 ,…”

“…After duplicates were removed (n = 1521), 6684 records were screened, and 979 records were selected for full‐text review. A total of 78 academic/peer‐reviewed articles 10,27‐103 and 41 grey literature items 104‐144 were included (Figure 1).…”

Designing Interventions Addressing Structural Racism to Reduce Kidney Health Disparities: A Report from a National Institute of Diabetes and Digestive and Kidney Diseases Workshop

“…Consensus-based community approaches to designing solutions for CKD may include convening diverse groups of stakeholders (including patients) to elicit perspectives on disease-related issues through a mutual learning process. 66,67 This approach can be used to develop shared research goals and agendas, 68,69 educational approaches and materials, [70][71][72] research implementation strategies, 54,73,74 partnered action plans that incorporate evidenced-based guidelines of care and community-partnered perspectives, [75][76][77][78][79] and more. 66,80 Improve Data Collection A key determinant of the effect of research is the rigor and appropriateness of the data collected and the procedures by which it is collected.…”

Healthcare provider perspectives on integrating peer support in non-dialysis-dependent chronic kidney disease care: a mixed methods study

“…Despite its benefits, the role of peer support in the comprehensive care of persons with non-dialysis-dependent CKD remains unestablished [ 16 ]. Opportunities for informal peer connection in non-dialysis-dependent CKD are uncommon, and uptake of formal peer support programs has traditionally been low with variability in how it is promoted and offered [ 15 – 17 ].…”