Background: Adolescents and young adults (AYA) do not have an equal opportunity for patient-centered outcomes research (PCOR) engagement. Social determinants are some of the most influential risk factors affecting AYA health and suboptimal impact of PCOR-focused comparative clinical effectiveness research (CER) engagement. COVID has exacerbated these inequities.
Proposed Solution to the Problem: The project team will develop youth-led, sustainable mechanisms for historically marginalized AYA in the San Francisco Bay Area and University of California San Francisco (UCSF) researchers to engage with each other as full research partners. This partnership establishes a Youth Research Advisory Council (YRAC), provides knowledge transfer and exchange through a CER for Equity Leadership Program (CELP), and develops a process for AYA CER priority setting.
Objectives: The primary objective is to develop an equitable and sustainable mechanism and process for marginalized AYA to engage in PCOR-focused CER that will promote health equity.
Aim 1: Establish YRAC comprising of AYA ages 15 to 24 years.
Aim 2: Adapt existing tools for youth-led CELP to build AYA research engagement capacity.
Aim 3: Implement a replicable process for currently and historically marginalized AYA to develop and disseminate a PCOR-focused CER agenda that promotes health equity.
To execute project aims, UCSF and YMCA-SF (YSF) will partner with AYA to develop YRAC, CELP, and AYA CER prioritization processes. Specific activities include:
- Onboard 5 AYA Youth Research Leaders and establish the 20 participant YRAC.
- Co-create CELP to build PCOR-focused CER capacity of YRAC members and provide a forum for reconciliation of historical and present research abuse.
- Develop and implement a process for CER priority setting and dissemination with AYA.
- Develop and implement a youth PCOR/CER research engagement process within UCSF.
Projected Outcomes and Outputs:
- A replicable process for developing a PCOR-focused CER agenda with currently and historically marginalized AYA.
- A list of CER research priorities from the perspective of marginalized AYA.
- The CER for Equity Leadership Program (CELP) designed to build AYA capacity to engage in CER; provide a process for reconciliation given current and ongoing experiences of AYA exclusion and discrimination; and, ultimately, promote health equity.
- A sustainable model for youth involvement in PCOR/CER at UCSF.
- Dissemination plan for the AYA PCOR-focused CER research priorities and CELP curriculum to key stakeholders positioned to action the research agenda and promote child health equity.
Patient and Stakeholder Engagement Plan: The proposed project engages YSF, a leader in youth development, to meet this identified need. The YSF has worked with youth from historically marginalized communities since 1853. The UCSF Center for Child and Community Health has a network of 100+ multi-sector stakeholders, representing key decisionmakers in government, research funders, and community-based organizations. Through this partnership, youth will be optimally supported to build PCOR/CER literacy and engage throughout the research process.
Project Collaborators: The YMCA-San Francisco, UCSF Clinical and Translational Sciences Institute, UCSF Division of Adolescent and Young Adult Medicine