Background: COVID-19 affected nearly every aspect of people’s lives worldwide. In the United States, the consequences of closures and quarantine increased stress, worry, isolation, and mental health and substance use problems. These issues were exacerbated among Black and Latinx (BAL) populations. The disproportionate burden on communities of color were heightened by language barriers, lack of mental health access, distrust in the health care system, shortage of mental health providers, and inadequate or lack of insurance coverage.
Proposed Solution to the Problem: Metropolitan Seattle comprises 30% of the state’s population and has the highest population density in Washington State. Seattle is located in King County; King County and neighboring Snohomish County contain large BAL populations. The project team’s goal is to engage with these populations; connect with existing networks of community stakeholders, providers, and researchers to co-learn about patient-centered outcomes research (PCOR); and build partnerships with those that work with these populations. It is important to have the people affected at the table in order to learn more about and prioritize their research needs.
Objectives: The project’s main aims are to form two patient family caregiver groups, to co-learn about PCOR/comparative clinical effectiveness research (CER) with the group, and to identify salient patient-centered outcomes and evidence-based practices, then share back with the patient family groups.
Activities: There will be meetings to engage BAL community members, providers, researchers, and other stakeholders to identity issues of concern, establish a Memorandum of Understanding, hold group conversations about relevant issues of concern, conduct interviews with health care leaders and clinicians, and co-learn research principles to prioritize a PCOR agenda to build capacity to address the mental health concerns which have arisen during COVID-19 and the lingering effects of mental health problems.
Projected Outcomes and Outputs:
Short-term outcomes during the project period include establishing an alliance of patients, caregivers, family members, community and other stakeholders to learn about behavioral health issues of concern and prioritizing a research agenda based on what the project team learns. Other outcomes include evaluating how to best learn from each other about issues of importance to the communities with whom the project team is collaborating.
Medium-term outcomes (0-2 years post-project period) include: Using the research questions learned from the alliance and applying them to appropriate applications that support PCOR/CER projects and that include these patients and other key stakeholders.
Long-term outcomes (3+ years post-project period) include: Expanding the engagement of patients and stakeholders and participating in a large-scale CER research project from the capacity built during the grant period.
Patient and Stakeholder Engagement Plan: The project’s patients are the BAL members engaging with stakeholders such as community leaders, providers, and health care leaders who make decisions and provide care for these populations. The project team will have meetings and individual interviews to prioritize research questions and co-learn in the engagement process. The project team will also have engagement activities, especially tailored to remote meetings, to discuss salient issues relevant to the group members.
Project Collaborators: The project’s key stakeholders and partners include the Latino Educational Training Institute, the Communities of Color Coalition, the Snohomish County National Association for the Advancement of Colored People (NAACP), Cultivate South Park in Seattle, and the National Alliance on Mental Illness.