Project Summary
Background: People experiencing addiction and homelessness, as well as those who have previously experienced incarceration, face enormous stigma from healthcare institutions. Frequently labeled and blamed for their own problems when they seek help, many lose trust and disengage from health care and social services where they feel unwelcome. Exclusion drives unmet needs, poor health outcomes, reduced quality of life, and early death. “Inclusion Health,” designed specifically to provide effective and compassionate care for people with stigmatizing conditions, offers a promising alternative, yet health equity researchers struggle to engage people who have little trust in health care, which inhibits the researchers’ ability to learn what works to improve patient-centered outcomes and reduce disparities.
Proposed Solution to the Problem: Health Equity Activation and Research Team (HEART) generates trusting relationships across differences in experience and background to change the dynamics of partnerships for health equity PCOR/CER within highly stigmatized communities. HEART puts people from excluded communities in charge of their own narratives and invites professionals into their space for partnership. To build trust between partners where trust has ruptured, this project starts with healing, and moves to action to build a research partnership with eight community peers/leaders and eight researchers/professionals through storytelling, relationship building, skill sharing, and collective impact.
Objectives: HEART will use a learning community approach to build: relationships across difference, capacity for research and action, and a foundation for lasting partnership, with the following activities:
- HEART capacity-building workshops with community peers, leaders, clinicians, and researchers brought together to help people heal from stigma, build relationships, and learn together.
- Inclusion Health research agenda, with collaborative planning for first PCOR/CER project by end of this project period.
- Radical Welcome community media campaign. Messaging will focus on reducing the impact of stigma, building welcoming communities and institutions, and encouraging active participation in PCOR/CER.
- Replication guide. HEART participants will be able to lead workshops remotely or in person to engage and mentor new participants locally and support replication in other communities struggling to engage with people with stigmatizing conditions.
Projected Outcomes and Outputs:
- HEART partners establish the Radical Welcome Inclusion Health and Health Equity Institute that has capacity for PCOR/CER among community partners with equitable resource sharing, representation, and decision-making power.
- Community members who have experienced highly stigmatizing conditions have relationships and skills they need to take leadership roles in research and community development.
- Researchers participate in a community of practice that deepens the value of their research, with engagement of communities they study in all phases of research design, implementation, and dissemination.
- Organizations committed to health equity among people experiencing stigmatizing conditions engage in collective impact, reduce stigma, and use community-generated research to build inclusive and welcoming programs that make a difference.
Patient and Stakeholder Engagement Plan: HEART organizational partners joined forces during the COVID-19 crisis to respond to immediate emerging needs in vulnerable populations. To build a health equity PCOR/CER research team, the project team draws on its strengths to engage context experts with lived experience. Lehigh Valley Health Network will engage patients from primary care addiction medicine, street medicine, and peer recovery support. Ripple Community, Inc. will invite participants from the Community Building Center, a supportive place for people who have experienced homelessness. Promise Neighborhoods of the Lehigh Valley will tap their strong network of emerging change leaders who were previously incarcerated. HEART commits to equitable compensation for participants.
Project Collaborators: HEART is an action-oriented partnership including Lehigh Valley Hospital (LVH), Promise Neighborhoods of the Lehigh Valley (PNLV), Ripple Community, Inc (RCI), Valley Health Partners (VHP), and Lehigh University (LU). HEART partners commit to working together for real, immediate, and lasting change, embodying the principles of Radical Welcome in its work. Partners share leadership, recruit participants, coordinate collaboration, and participate in HEART activities together. This project convenes a group of eight context experts with lived experience of stigmatizing conditions, and eight content experts with professional experience in a 15-month group process designed to build relationships across difference, co-create capacity for collaborative research, and result in lasting partnerships for action and research for Inclusion Health.