The benefits of meaningful partnerships between researchers and patient partners
A new study reveals key concerns – and factors of success – that researchers and patients expressed while working together in the context of a national patient-oriented research network.
Patient-oriented research is the purposeful and meaningful involvement of patients and the public in health research. Can-SOLVE CKD is a national, patient-oriented research network dedicated to improving the care, outcomes and quality of life for people across Canada affected by kidney disease. However, when the network was initially established, many patients and researchers alike were unsure of how, exactly, to engage together meaningfully in research. Meghan Elliott, Nicolas Fernandez and colleagues conducted a qualitative study with Can-SOLVE CKD researchers and patient partners to understand challenges and factors of success that emerged over first two years of the network’s inception. They conducted focus groups and individual interviews with a total of 24 patient partners and 24 researchers from 17 network research projects.
For patient partners, relationship-building and partnerships were critical for mitigating concerns about issues such as tokenism. As well, they described an increasing appreciation of having their voices recognized. Researchers, on the other hand, described gaining a greater understanding of the implications of their work to those living with kidney disease, and provided several examples of how patient partner involvement enhanced patient‐facing materials, interview question wording and outcome selection. Researchers also indicated that this type of research engagement could enable realistic, honest and pragmatic discourse about end‐user needs.
Collectively, the results show that patient-oriented research within the network reinforced a shared purpose, fostered a culture of responsive and innovative research, and helped align priorities, goals and needs. Participants also emphasized sustainability of research products and processes.