Engaging children, young adults, and other partners to identify priorities for sport related concussion research.

backgroundThere is a critical need for research to improve sport related concussion (SRC) screening, diagnosis, and treatment. To ensure these research efforts are patient-centered, children, young adults, parents, and other professionals should be engaged as partners. However, optimal strategies to engage children and young adults as research partners and the impact of these efforts on engagement remain unclear. Failing to engage children and young adults with SRC lived experience as partners will limit researchers' efforts to complete meaningful patient-centered comparative effectiveness research (CER). The goal of this project was to create a knowledgeable and engaged group of children and young adults with SRC lived experience, their parents, and professionals to build their patient-centered CER capacity by providing education on CER and identifying shared research priorities on issues with SRC screening, diagnosis, and treatment.

methodsPartners in two separate groups (Patient-Parent-Coach Group [n = 15]; Professional Group [n = 23]) joined one-hour meetings on a virtual platform. An Engagement Survey was sent to partners to evaluate teaching methods, meeting structure, satisfaction with engagement, and opportunities for improvement. Meetings were designed to (1) educate engagement partners on CER and the PICOTS (Population, Intervention, Comparator, Outcomes, Timeframe, Setting) framework, (2) identify determinants and solutions to SRC screening, diagnosis, and treatment, (3) generate PICOTS components, and (4) prioritize PICOTS components.

resultsSeveral strategies were used to facilitate and sustain engagement: (1) establishing two independent engagement partner groups, (2) creating patient/parent dyads, (3) cultivating a brave space for interaction, (4) asking partners about their meeting preferences, (5) providing an open and consistent line of communication, (6) utilizing the virtual platform's interactive activities, and (7) refining meetings based on feedback from partners. Partners actively engaged, felt successful in their role as engagement partners and agreed that they would engage with us in the future. Several CER questions were identified, discussed, and prioritized, of which eight were voted as "essential priority".

conclusionsAcross two years, we developed an engaged and collaborative group of partners and identified, discussed, and prioritized CER questions that reflect the priorities and outcomes that matter most to our engagement partners.