The Share Project (TSP) builds the collective capacity of patients and advocates impacted by the criminal justice system, policymakers, and clinician-researchers to improve the health of individuals returning from incarceration. This is accomplished through a unique data sharing platform and capacity building activities. This online platform was designed to share TCN data with these stakeholders who were trained in research design with a focus on patient-centered outcomes research (PCOR) and community-based participatory research (CBPR) using the data sharing platform.
Reducing Health Disparities through Equitable Inclusion in Research
Four TCN programs, based in New Haven, CT, San Francisco, CA, Rochester, NY, and Bronx, NY, were chosen for this project. Each of the four teams participating in The Share Project was made up of at least one patient with a history of incarceration, one community health worker from TCN (also with a history of incarceration), one TCN clinician-researcher, and one community or correctional health policy maker selected for their ability to work with the team to develop and move forward a policy issue related to the health of patients impacted by the criminal justice system.
Four teams made up of:
– 1-2 Patients
– 1 Community Health Worker
– 1 Clinician Researcher
– 1 Correctional or Community Policy Maker
TSP had three phases:
1. TSP Data Sharing Platform: Development of a data sharing platform to allow for exploration of health and criminal justice data of TCN patients.
2. CBPR/PCOR Training: Capacity building of TSP teams to prepare them to use the data sharing platform and provide an understanding of community-based participatory research (CBPR) and patient-centered outcomes research (PCOR).
3. PCOR Research Projects: Design of patient-centered research projects to address the health of justice-involved individuals.
TCN Cohort Study: The TCN cohort study collected data from more than 751 people leaving prisons across the United States and Puerto Rico. Data were collected from surveys and electronic medical records of chronically-ill recently released TCN patients at 13 TCN community health centers nationwide.
TSP Data Sharing Platform: The data sharing platform was designed through a collaboration between a Study Advisory Board of formerly incarcerated TCN patients and the Yale Center for Informatics. Patient preferences for bar graphs as opposed to infographics, led to the inclusion of bar graphs for displaying data. Using data from the TCN cohort study, the platform integrated our patient health and criminal justice data into a platform capable of performing univariate and bivariate analysis. The platform displays the results of the analysis in a form that can be understood by a variety of users with different levels of computer and data literacy.
TSP CBPR/PCOR Training Retreat: TSP adapted the UCLA Center for Health Policy Research Data and Democracy curriculum, a well-established curriculum for teaching community members principles of research, to train TSP participants. Integrating CBPR and PCOR into the curriculum and using exercises that incorporated the use of the data sharing platform, participants worked together in teams to develop ideas for new research.
Curriculum Development Team/Trainers: The curriculum for the TSP training was adapted by a team experienced in teaching the Data & Democracy Curriculum and in community-based participatory research. The team included justice-involved individuals in the process of adaptation and teaching to make the curriculum more relevant to the lived experiences of incarceration and to increase participant comfort in participating in the training retreat activities.
PCOR Research Projects: The four TSP teams designed research projects using the information from the data sharing platform and the experiences of formerly incarcerated patients and community health workers, clinician researchers, and correctional/community health policymakers. The new research projects were patient-driven and responsive to the needs of correctional and community providers who would have to implement the interventions.
TSP Projects in Development:
TCN Team (Bronx, NY)
Research Problem: Barriers and interventions to address Hepatitis C care post-release
TCN Team (New Haven, CT)
Research Problem: Peer-led diabetes intervention in CT prisons
TCN Team (Rochester, NY)
Research Problem: Community forum on reentry needs in Rochester
TCN Team (San Francisco, CA)
Research Problem: Role of discrimination and stigma in access to mental health care
• Patients are interested in data and research.
• Importance of including formerly incarcerated trainers and community health workers as part of the project for patient engagement.
• Teaching research to a group with varying data literacy and exposure to research was complex, but worth the team building that resulted from the shared learning process.
• Data sharing and varying needs of different groups using the platform.
• Integrated community-engagement principles into the development of the data sharing platform, curriculum, and capacity building activities.
• Engaged patients traditionally marginalized in the research process.
• Shared data back to stakeholders who will be integral to catalyzing improvements in the health of justice-involved people.
• Enabled TCN patients to participate more equitably in the analysis and interpretation of data.