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Background In the past decade, patient-oriented research (POR) has been at the forefront of healthcare research in Canada because it has the potential to make research more meaningful and relevant to patient needs. Despite this growing emphasis on and expectation to conduct POR, there is limited guidance about how to apply POR in practice. To address this capacity building need, the Knowledge Translation (KT) Program and patient partners co-designed, delivered, and evaluated Partners in Research (PiR), a 2-month online course for patients and researchers to collectively learn how to conduct and engage in POR. Methods PiR was delivered to 4 cohorts of patients and researchers between 2017 and 2018. For each cohort, we evaluated the impact of the course on participants’ knowledge, self-efficacy, intentions, and use of POR using surveys at 3 time points: baseline, post-course and 6-months post-course. We also monitored the process of course design and delivery by assessing implementation quality of the PiR course. Participants were asked to rate their satisfaction with course format, course materials, quality of delivery and their level of engagement via a 7-point Likert scale in the post-course survey. Results A total of 151 participants enrolled in the PiR course throughout the 4 cohorts. Of these, 49 patients and 33 researchers (n = 82 participants) consented to participate in the course evaluation. Process and outcome evaluations collected over a 9-month period indicated that participation in the PiR course increased knowledge of POR concepts for patients (p < .001) and for researchers (p < .001) from pre-course to post-course timepoints. Likewise, self-efficacy to engage in POR increased from baseline to post-course for both patients (p < .001) and researchers (p < .001). Moreover, participants reported high levels of satisfaction with content, delivery and interactive components of the course. Conclusions The PiR course increased capacity in POR for both researchers and patients. This work enhances our understanding of how to design useful and engaging education opportunities to increase patient and researcher capacity in POR.

Retinoblastoma is a rare eye cancer that occurs in one or both eyes of infants and young children as a result of errors in the RB1 gene. There are approximately 2000 retinoblastoma survivors in Canada. Those with the heritable form of the disease are at risk of passing the gene to the next generation and developing a second cancer. Many retinoblastoma survivors and families therefore interact with the healthcare system throughout their lives. The retinoblastoma community has a longstanding history of engaging patients in research, however without any formal process. The literature establishes benefits to patient engagement such as research results which are more applicable, credible, and transparent. Building on the established interest among stakeholders, the Canadian Retinoblastoma Research Advisory Board (CRRAB) was established in 2016 to foster sustainable and meaningful collaboration between patients (survivors and family members), advocacy groups, healthcare professionals, and researchers in the retinoblastoma community. The aim of this study was to evaluate the utility of CRRAB in fostering patient engagement in research. Members of CRRAB were surveyed to uncover their attitudes towards and experience with patient engagement in research. Participants perceived CRRAB to provide diverse and accessible opportunities for patient engagement in research and perceived their participation to have a meaningful impact. The results suggest that CRRAB promotes patient engagement in retinoblastoma research, and provides direction to sustain and enhance future patient engagement.