Background: The life expectancy of people experiencing homelessness is roughly 20 years less than the average housed person in America. This excess mortality among people who are homeless is largely due to chronic disease, including heart disease, cancer, liver disease, lung disease and diabetes. More research is needed to compare the relative benefit of different interventions that could improve chronic disease management among people who experience life on the streets and in shelters. To be most impactful, such research should be informed by the needs, preferences and priorities of people who are unhoused and their care teams. Yet the dire circumstances of homelessness— combined with experiences of stigma and discrimination—often lead to the exclusion of unhoused individuals from health research.
Proposed Solution to the Problem: This project will build the capacity of patients and staff at a large Health Care for the Homeless (HCH) program in Boston to engage in patient-centered outcomes research (PCOR)/comparative clinical effectiveness research (CER) focused on chronic disease in this population. Through a combination of tailored trainings and advisory forums, the project team will educate stakeholders about the fundamentals of PCOR/CER while eliciting their perspectives about high-priority research questions related to chronic disease, outcomes of interest, research ethics in homeless health care studies and related topics.
Objectives: The primary objective of this project is to build capacity for patients and staff at an HCH program to engage in PCOR/CER focused on chronic disease management among people experiencing homelessness.
Activities: Using patient and staff input, this project will make use of PCORI’s Research Fundamentals training and will adapt content from two other PCORI-funded resources (the “Connecting Community to Research” toolkit and the “EnCoRE: Enhancing Community Health Center PCORI Engagement” training) focused on building PCOR/CER capacity among community members and community health center staff. A series of 12 monthly and six drop-in trainings will be offered in concert with Community Research Council advisory forums for interested patients and staff.
Projected Outcomes and Outputs: Project outputs include trainings (for patients/staff) on PCOR/CER fundamentals, PCOR/CER agenda focused on chronic disease among people experiencing homelessness, and a Standard Operating Procedure for involving patients and staff as research partners in an HCH program.
Short-term outcomes during the project period include: improved stakeholder knowledge regarding PCOR/CER concepts, improved researcher awareness of patient/care team needs for successful research partnership and a PCOR/CER agenda developed with patient/staff engagement.
Medium-term outcomes (0-2 years post-project period) include: enhanced capacity of homeless persons and Boston Health Care for the Homeless Program staff to conduct PCOR/CER focused on chronic disease.
Long-term outcomes (3+ years post-project period) include: reduced chronic disease burden among people experiencing homelessness and research that is more relevant and useful to patients.
Patient and Stakeholder Engagement Plan: Based on stakeholder input, the project’s engagement model will be as inclusive as possible, recognizing that not all patients will be stable enough to participate longitudinally. A stable cohort of 12 patients and 12 staff will participate in trainings and Council (advisory) meetings. An additional 65 patients and 30 staff will join drop-in trainings and advisory meetings (six for patients, two for staff).
Project Collaborators: Lillian Gelberg, M.D., MSPH (University of California, Los Angeles) will serve as consultant.