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.