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Patient partners refers to co-researchers with lived/living experience either through their own experience with illness or as a caregiver for a loved one with illness. Although the merits of patient partnership in kidney health research are increasingly accepted and promoted, the methods and strategies for recruiting patient partners to become involved in research are poorly understood and not widely reported on, leading to a paucity of practical patient partner recruitment strategies and tools.
The Canadian Institutes of Health Research’s Strategy for Patient-Oriented Research (CIHR-SPOR) Networks were created to transform the role of patients from passive recipients of care to active partners in health research to improve care. Since 2016, the National Can-SOLVE CKD Network operating under the CIHR-SPOR umbrella has focussed on transforming the landscape of kidney research and care with meaningful patient engagement as its guiding principle. The Network supports nine research projects across Canada ensuring that patient partnership is at the heart of each project.
We conducted an environmental scan of existing research in academic publications, consolidated results from our nine Network projects’ reports and review committee project check-in calls, examined the effectiveness of the Network-developed website linking researchers and patient partners (www.kidneylink.ca), and consulted with the Network Patient Governance Circle, a patient partnership advisory council, and the Network Indigenous Peoples’ Engagement in Research Council. We consolidated the data and conducted a thematic analysis to identify successes and challenges to inform the development of a patient partner recruitment toolkit.
A recurring challenge among researchers is the recruitment of patient partners at both the outset of research as well as along the research trajectory; of particular challenge is the recruitment of those individuals from ethnic and gender diverse (e.g., BIPOC and LGBTQI+) communities. Existing patient partner recruitment strategies indicate distinct categories, including: (1) macro-level (e.g., social media marketing through digital patient forums and groups, Instagram, TikTok, Facebook, etc.); (2) meso-level (e.g., community outreach; partnering with aligned charitable bodies; (3) micro-level (e.g. direct recruitment by clinicians through interactions with patients and direct recruitment through peer-to-peer referrals).
This research explores patient partner recruitment within the kidney health research context in Canada. It acknowledges the shifting landscape of patient partner recruitment, examines the obstacles preventing patients from participating as patient partners, reports on the successful strategies, explores the utilization of social media as a tool to connect with those that are harder to reach and describes the resulting development of a patient partner recruitment toolkit.