Background: Precision medicine (PM) will transform disease treatment and prevention, by looking at how variability in genetics, environment, and lifestyle interact to affect health outcomes. PM advances are dependent on equitable biomedical research resources. Disproportionate engagement of marginalized groups threatens PM advancements and risks increasing health inequities for the most vulnerable populations.
Proposed Solution to the Problem: Building on efforts for promoting health equity and expertise from the All of Us Research Program (AoURP), this project will engage Federally Qualified Health Center (FQHC) patients with PM research. The patient-centered approach will better inform researchers on the cultural and socioeconomic experiences of FQHC patients. With guidance from a multi-stakeholder task force, patient advisors will share their experiences to help inform and prioritize PCOR/CER on PM research that will benefit their communities.
Objectives: The long-term goal is increased representation of vulnerable populations in PCOR/CER. The first objective is a needs assessment to learn about patient experiences and then utilize these to identify strategies for integrating FQHC patient perspectives into relevant questions for PCOR/CER. The second is to develop a roadmap prioritizing PCOR/CER to advance PM for FQHC patients.
Activities: Utilizing an iterative framework, information from patient focus groups will be shared with the task force for refinement into PCOR/CER questions and improve the sources of data used in PCOR when planning future studies. Focus groups convenings will be hosted in English or Spanish with patients from four cities to ensure diverse representation of socioeconomic status, patient preferred language, and racial/ethnic identities. Facilitated discussions will educate patients on PM initiatives and identify strategies to integrate their experiences to develop relevant PCOR/CER questions for PM research. The task force consists of patients, clinicians, researchers, and community and industry representatives.
Projected Outcomes and Outputs: The short-term outcome is a better understanding of patients’ knowledge of, and interest in, PM. Outputs, including patient feedback, will inform recommendations by the task force. Information gained from convenings will be used to develop a roadmap to prioritize PCOR/CER on PM to increase longitudinal participation of vulnerable populations in research. After the project period, the long-term outcomes are to conduct PCOR/CER which will compare and evaluate the effectiveness of patient-provided strategies versus usual care and disseminate findings that are broadly applicable to PM initiatives for these populations to eventually mitigate health inequities. Deliverables will include educational materials, engagement and evaluation plans, and a roadmap prioritizing PCOR/CER questions.
Patient and Stakeholder Engagement Plan: AoURP insights inform the strategy of engaging FQHC patients more purposefully: develop a trusting relationship, meet patients where they are, create a culture of “participants as partners”, and actively engage throughout project development and execution. A Community Health Center, Inc (CHCI) patient will contribute to all areas of this project and serve as co-lead. Engagement will occur through clinicians and community events. Participation of English- and Spanish-speaking patients from various cities will foster racial/ethnic and socioeconomic diversity. Three focus group convenings and task force convenings will be held over the one-year project period.
Anuli Njoku DrPh, MPH, Associate Professor in the Department of Public Health at Southern Connecticut State University
Melody Goodman PhD, Associate Dean for Research Associate Professor of Biostatistics NYU School of Global Public
B. Monica Bowen PhD, Clinical Genomics Scientist Invitae