The dynamic nature of patient engagement within a Canadian patient‐oriented kidney health research network

Perspectives of researchers and patient partners

Bibliographic Data

ID19509101
AuthorsMeghan J Elliott (0000-0002-5434-2917, Department of Medicine University of Calgary Calgary Alberta Canada, corresponding author), Tamara L McCarron (0000-0001-7242-1910, Department of Medicine University of Calgary Calgary Alberta Canada), Kara Schick‐makaroff (0000-0001-6200-3416, Faculty of Nursing University of Alberta Edmonton Alberta Canada), Leah Getchell (CanSOLVE CKD Network Patient Partner Vancouver BC Canada), Braden Manns (0000-0002-8823-6127, Department of Medicine University of Calgary Calgary Alberta Canada), Nicolás Fernández (0000-0002-3840-2641, CanSOLVE CKD Network Patient Partner Vancouver BC Canada)
Year2023
Volume26
Issue2
Pages905-918
Publication date2023-04-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueHealth Expectations (JOURNAL)
Journal identifiersISSN: 1369-6513 • E-ISSN: 1369-7625
PublisherWiley (PUBLISHER • GB)
DOI10.1111/hex.13716
PMID36704935
OpenAlexW4318263851
LanguageEN
Citations received3
References cited43

INTRODUCTION: Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) is a pan-Canadian health research network that engages patients as partners across 18 unique projects and core infrastructure. In this qualitative study, we explored how research teams integrated patient partners into network research activities to inform our patient engagement approach. METHODS: To capture a breadth of perspectives, this qualitative descriptive study purposively sampled researchers and patient partners across 18 network research teams. We conducted 4 focus groups (2 patients and 2 researchers; n = 26) and 28 individual telephone interviews (n = 12 patient partners; n = 16 researchers). Transcripts were coded in duplicate, and themes were developed through an inductive, thematic analysis approach. RESULTS: We included 24 patient partners and 24 researchers from 17 of the 18 projects and all core committees within the network. Overarching concepts relate participants' initial impressions and uncertainty about patient engagement to an evolving appreciation of its value, impact and sustainability. We identified four themes with subthemes that characterized the dynamic nature of patient engagement and how participants integrated patients across network initiatives: (1) Reinforcing a shared purpose (learning together, collective commitment, evolving attitudes); (2) Fostering a culture of responsive and innovative research (accessible supports, strengthened process and product); (3) Aligning priorities, goals and needs (amenability to patient involvement, mutually productive relationships, harmonizing expectations); (4) Building a path to sustainability (value creation, capacity building, sustaining knowledge use). CONCLUSIONS: Our findings demonstrate the dynamic and adaptive processes related to patient engagement within a national, patient-oriented kidney health research network. Optimization of support structures and capacity are key factors to promote sustainability of engagement processes within and beyond the network. PATIENT OR PUBLIC CONTRIBUTION: This project was conceived in collaboration with a Can-SOLVE CKD patient partner (N. F.), with lived experience of kidney failure. He also co-designed the study's protocol, led focus groups and researcher interviews, and contributed to data analysis. L. G. has lived experience as a caregiver for a person with CKD and facilitated patient partner focus groups. The patient partners, both of whom are listed authors, provided important insights that shaped our interpretation and presentation of study findings

Health care · Knowledge management · Medical education · Political science · Public relations · Qualitative research · Sociology · Sustainability · Thematic analysis · Computer Science · Health Policy Implementation Science · Medicine · Mental Health and Patient Involvement · Nursing · Patient-Provider Communication in Healthcare · Psychology

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