For the Canadian Lyme Disease Research Network (CLyDRN), patient engagement involves more than patients sharing their lived experiences; it’s also about ensuring patients, family members, and advocates inform the research process and the future direction of the network. Across CLyDRN, these partners play an integral role sitting on the network’s governance committee, contributing to the Patient and Community Advisory Committee (PCAC), advising on research projects, and planning major network events such as Tick Awareness Month and the annual TickNet Canada Scientific Symposium. Their perspectives ensure that every aspect of the network, from governance to research to knowledge mobilization, is informed by lived experience.

Janet Parsons, from the Department of Occupational Science and Occupational Therapy, University of Toronto, is a network researcher who leads an arts-based Brokered Dialogue study on Lyme disease. When discussing the study, Janet highlighted the importance of patient engagement to the research project: “We have a study working group that is half scientists and half patient partners, but we’re all researchers because we’re all interested in what happens with this work. As we designed the study together, the idea was that the voices of patients would be represented in a way that we actually consider how everybody is a practitioner in the Lyme disease space. The complexity we all bring to the table and being able to sit and deepen our understanding of how we should do this work thoughtfully and authentically and how we should think about the stories we’re hearing and how we should share those stories is incredibly helpful.” Involving patients as co-researchers, rather than solely as study participants, deepens the understanding of study data and enhances the interpretation and communication of research findings to better inform healthcare practices and policy decisions.

However, meaningful patient engagement in research requires consistency and transparency. Nancy Garvey, a patient advocate, points out that to establish trust and understanding between researchers and patient partners, “it helps to have the scientists review scientific methods, limitations and expectations with patients, as well as for patients to review their related life experiences that need to be addressed through relevant research.” Having a structured and straightforward process for researchers and patients to communicate about patient engagement is a practice that both Nancy and Tamara Rader, have advanced within the network by advocating for full implementation of the Canadian Institutes for Health Research Strategy for Patient Oriented Research and the GRIPP2 (Guidance for Reporting Involvement of Patients and the Public) framework. Tamara, a patient partner who leads the PCAC, underscores the importance of proper documentation in patient engagement efforts: “If people aren’t reporting it, then there’s no way we can say to our funders, we did it. And, how can you improve your engagement methods if you don’t have a baseline of what has been done in the past?” Nancy and Tamara’s work, along with other PCAC members, to implement a Patient Engagement Strategy for the network as well as an international reporting framework ensures that patient engagement is consistent and transparent and isn’t simply an afterthought but a fundamental part of how research is conducted within the network.

CLyDRN continues to demonstrate leadership by working to improve how patients, families, and advocates are engaged in Lyme and tick-borne disease research. The network’s evolving approach to patient engagement doesn’t just aim to improve science and health outcomes, it also aspires to make research more responsive, inclusive, and impactful.