Empowering partnership: Key lessons from the co-development of patient-oriented research with parents, researchers, and healthcare professionals

Jacqueline M. Wilson^1*Seija K. Kromm^2,3Christine Johns^4,5,6Michelle L. Neraasen^6,7Tapuwa Chinhengo⁶Shannon D. Anderson⁸Elsa Fiedrich^10,9Deborah McNeil¹¹

• ¹Faculty of Nursing, University of Calgary, Calgary, Canada
• ²Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Canada
• ³Acute Care Alberta, Calgary, Canada
• ⁴Werklund School of Education, University of Calgary, Calgary, Canada
• ⁵Patient and Family Advisor, Alberta Health Services, Calgary, Canada
• ⁶Parent Partner, NICER Research Team, Calgary, Canada
• ⁷Birth and Postpartum Doula, Edmonton, Canada
• ⁸Covenant Health, Edmonton, Canada
• ⁹Section of Newborn Critical Care, Department of Pediatrics, Cumming School of Medicine,, University of Calgary, Calgary, Canada
• ¹⁰Southern Alberta Neonatal Transport Service, Calgary, Canada
• ¹¹Faculty of Nursing, and Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Canada

Background: Co-developing research in partnership with patients and families is integral to Learning Health Systems (LHSs). These partnerships advance LHS objectives by (1) ensuring innovation is relevant to local contexts, (2) accelerating evidence into practice, and (3) improving services and outcomes that are meaningful to patients and families. Despite the importance of patient and family engagement in LHSs, strategies that guide researchers to build and sustain teams of patients, clinicians, and other partners are under-reported. Objective: We report actionable insights for co-developing research learned through our experience within Alberta's LHS. Context: Parents from a provincial advisory group in Alberta identified the need to evaluate parents' experiences with family-centered care in Neonatal Intensive Care Units (NICUs). In response, a research team of parent partners, researchers, and clinicians is co-developing a validated experience measure for parents in NICUs. Methods: During co-development, the research team engaged in reflective practice through semistructured discussion informed by Schön's Reflection Model. Notes from the discussion were thematically analyzed to identify insights and research co-development strategies. Results: Three key insights and associated strategies were generated: (1) operationalizing co-development through a shared governance structure, terms of reference, and dedicated reflection; (2) adaptive approaches to team member involvement, renegotiating workflows, and addressing dissent; and (3) team evolution by nurturing reciprocity and utilizing existing partnerships to recruit members. We demonstrate how a team of patient partners, researchers, and clinicians can effectively co-develop research to address health system issues, and we present strategies to support patient-oriented research teams within LHSs.