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

There 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. Partners 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. Several 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". Across 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. Sport related concussion (SRC) is common and negatively affects the lives of children. Researchers must partner with children, young adults, parents, and other professionals to understand how to best recognize, manage, and treat SRC. The goal of this project was to educate and engage children and young adults who have had a SRC and professionals as research partners to develop meaningful research questions on SRC. Two separate engagement partner groups (Patient-Parent-Coach Group and Professional Group) joined one-hour virtual meetings at the end of each month. During meetings we educated partners on how to develop research questions and came to agreement on our research priorities. After each meeting, partners filled out an Engagement Survey, which asked about satisfaction with engagement and ways to improve the meetings. We used many ways to increase engagement like, (1) having two separate engagement partner groups, (2) pairing middle and high school aged partners with their parents, (3) creating a brave space for interaction, (4) asking partners about when meetings should be, (5) having an open line of communication, (6) using engaging activities in addition to open discussion, and (7) changing meetings based on partner feedback. Partners felt successful as engagement partners and agreed they would partner with us in the future. As a group we created many research questions, with eight voted as "essential". By partnering with children and young adults, we identified research questions that are important to them to improve outcomes after SRC.