Sexual and gender minority youth (SGMY) have specific needs that the healthcare community is only beginning to understand. Research has shown correlations between SGMY status and depression, suicide attempts, bullying, illicit drug use, and increased rates of HIV, yet there is little understanding of how best to deliver patient-centered healthcare services to this vulnerable population. Any effort to develop and study interventions aimed at addressing the health needs of SGMY must be both grounded in the lived experience of these young people and relevant to their health concerns. The proposed solution is to bring together the Rainbow Collaborative, comprising SGMY patients, families, community stakeholders, and researchers in Detroit, Michigan to engage in co-learning and collective research agenda development. By prioritizing the participation of these young people, the project team can develop research questions and interventions that have a real-world impact on the health and wellness of this population.
The team's approach will focus on creating a forum in which collaborative relationships are supported and the input of young people is prioritized. Bi-monthly meetings will focus on development of shared decision making followed by co-learning on the research process and patient-centered outcomes. Development of a research agenda will take place in stages co-facilitated by community co-leaders so as to maximize patient and stakeholder input. A community symposium will be held to share results of the ensuing research agenda, followed by collaborative development of a strategic plan for future CER and dissemination. Outcomes will include:
- A memorandum of understanding that is developed by the collaborative and guided by the PCORI Engagement Rubric
- The results of surveys and semi-structured interviews conducted twice during the project period with collaborative members to evaluate the collaborative process with regard to inclusion, decision-making, and transparency
- A research agenda developed by stakeholders around prioritized health issues meaningful to SGMY
- A draft strategic plan for future CER to be executed by the collaborative, including innovative dissemination techniques and funding opportunities
The researchers will be collaborating with community-based organizations (CBO) who work with SGMY in Detroit to identify young people, family members, and staff for the Rainbow Collaborative including the Ruth Ellis Center, Affirmations, and the Trans Sistas of Color Project. Group meetings will be led by two community co-leaders who are well-known to the SGMY community. Researchers will team with co-leaders, families, and CBO staff (who have established relationships with SGMY) to ensure young patient partners receive logistical support to attend meetings (i.e., reminders, transportation coordination). Additionally, through supportive co-learning, the team will develop meaningful research capacity among the SGMY and community stakeholders who participate. The project leaders hope that by developing working relationships founded on trust, transparency, and mutual respect, the Rainbow Collaborative will not only create a patient-centered research agenda for the future but will continue to collaborate to pursue that agenda beyond this Engagement Award and ultimately have a lasting positive impact on the health and well-being of sexual and gender minority youth in Detroit and beyond.