Introduction:
Patient-oriented research (POR) is increasingly promoted in kidney health research and is regarded as integral to ensuring that research aligns with patient priorities. Involving patients and caregivers as partners in research (patient partners) engaged in every stage of the research, from identifying research questions to co-developing protocols, analyzing data, and knowledge dissemination activities, supports a relevant research program as well as fostering an empowering experience for patients and caregivers. Supporting POR and acknowledging the depth and breadth of knowledge that patient partners contribute from their lived experience is integral to ensuring research is most relevant for those for whom it matters most. Despite the increasing recognition of the value of POR, the methods to recruit patient partners in research are poorly understood and not widely reported on.
In 2016, Can-SOLVE CKD, a national research network, has funded and facilitated 27 POR research projects focussed on kidney health and disease across Canada. Drawing on the successful strategies employed by the network, we present the results of the co-development and implementation of practical patient partner recruitment methods and tools including the implementation of a peer-to-peer mentorship recruitment strategy.
Methods:
We conducted an environmental scan of existing research in scholarly publications, gathered data from the network projects’ reports and reviews and the network-developed website, and conducted a survey and roundtable discussions with network patient advisory councils to identify the most common and effective recruitment methods and strategies. Data were consolidated and analyzed thematically to identify successes and challenges to inform the development of a patient partner recruitment toolkit.
Results:
A common challenge among researchers is the recruitment of patient partners; especially for recruiting ethnically- and gender-diverse participants. Once patient partners have joined a research team, retention is not a common challenge. Patient partners that are already engaged describe common recruitment as peer-to-peer. Effective patient partner recruitment strategies are categorized thematically along socio-spatial distances, including: macro-level; meso-level; and micro-level and temporally according to illness/treatment stabilization. Peer-to-peer recruitment is the most common route to patient partnership; however, a multi-faceted approach is the most effective way to reach the most diverse participants. Preliminary results illustrate the successful development and implementation of a peer-to-peer mentorship and engagement strategy as an effective means to promote capacity-building, peer support, and enabling effective recruitment.
Conclusions:
Recruiting patients and caregivers as partners in research in the kidney health research context may present some challenges, especially for harder-to-reach participants; however, by targeting various levels of reach, considering timing of recruitment and promoting and supporting peer-to-peer recruitment enable a strategy for capacity-building and success.
I have no potential conflict of interest to disclose.
I did not use generative AI and AI-assisted technologies in the writing process.