Abstract
The Share Project (TSP), a US health justice initiative, convened key stakeholders to advance the use of inclusive research methods and data sharing to engage groups that are typically marginalized from research. TSP trained justice-involved patients, community health workers, policymakers, and researchers in participatory research and the use of a data-sharing platform developed with justice-involved patients. The platform allowed users to analyze health and criminal justice data to develop new research that is patient driven and responsive to the needs of providers.
Justice-involved individuals are at high risk for poor health outcomes, including preventable hospitalizations and deaths.1 A lack of coordination between corrections and community health care, limited self-efficacy during incarceration, and lack of access to a primary care provider, insurance, and medication at the time of release may contribute to this risk. Justice-involved individuals are significantly underrepresented in research because of restrictions on research among prisoners and their mistrust of researchers, resulting in minimal data to guide health intervention development.2 Even research designed for justice-involved individuals as end users rarely involves them as owners of the research, whereby they have agency in the production of knowledge and its use.3 Past research has shown, however, that without the input of justice-involved individuals and health care policymakers, interventions, even those that are efficacious, are not adopted by health care systems, utilized by patients, or disseminated to scale.1
INTERVENTION
The Share Project (TSP) was designed to build research capacity among justice-involved individuals in partnership with key stakeholders in health care intervention design, including researchers and community and correctional policymakers. TSP used a community-based health informatics approach to engage these stakeholders in the Transitions Clinic Network (TCN), a national consortium of primary care centers that provides care to individuals recently released from prison. TSP had three stages and throughout addressed specific barriers to participation of justice-involved individuals: the power dynamics of mass incarceration, access to data, and limited data literacy. First, medical informaticists partnered with an advisory board of TCN patients (all with a history of incarceration) to design a Web-based platform that shares de-identified data from a prospective cohort study of TCN patients and that can be used by people of varying data literacy to perform bivariate analyses.4 The study included data collected using surveys and electronic medical records of 751 individuals recently released from prison with chronic medical conditions from 13 clinics and community health centers nationwide. Second, we adapted a curriculum designed using a community-based participatory research (CBPR) approach to train diverse teams in research design for patient-centered outcomes research (PCOR).5 Finally, we assembled four teams of TCN patients, community health workers, policymakers, and researchers to design future research studies, using the curriculum and the Web-based platform as tools to generate hypothesis-driven questions collaboratively.
PLACE AND TIME
Between 2015 and 2017, four TCN sites participated: those located in New Haven, Connecticut; San Francisco, California; Rochester, New York; and Bronx, New York.
PERSON
Although TCN’s patients are all people recently released from prison, each TSP team drew from a diverse group of stakeholders interested in the health of justice-involved patients. Each site’s team included a patient, a community health worker with a history of incarceration, a clinician researcher, and a community or correctional health policymaker. In all, 17 individuals participated: 53% were women, 41% self-identified as Black/African American, 29% as White, and 12% as Hispanic/Latino. At least half of TSP participants were justice involved. Only one patient had previous experience with research, and most community health workers and policymakers had participated on a research team.
PURPOSE
TSP aimed to involve those directly affected by incarceration (i.e., patients and community health workers), to encourage the inclusion of other key stakeholders in their health care, and to demonstrate the value of the use of CBPR, PCOR, and health informatics approaches to researchers and community and correctional partners.6 By bringing together interdisciplinary teams, research can be designed and used by stakeholders who are diverse and equally integral to catalyzing improvements in the health of justice-involved people.
IMPLEMENTATION
We applied the tenets of CBPR to PCOR to upend the power dynamics of mass incarceration and traditional research paradigms to fully engage justice-involved patients in the design of research studies that improve their health. Both CBPR and PCOR value the expertise of community members and patients to enhance research. Combining CBPR and PCOR and their unique emphases—action and outcomes orientation, community participation and patient focus, and capacity and evidence growth—creates a positive feedback loop that strengthens the community it serves, but also improves the rigor of the resulting studies (Figure A, available as a supplement to the online version of this article at https://www/ajph.org).
The Share Project Web-Based Platform
To design a functional prototype of a data-sharing platform for displaying, browsing, and analyzing TCN data, we convened a study advisory board of seven justice-involved patients from the TCN program in New Haven to partner with the Yale Center for Medical Informatics.4 These patients provided iterative feedback during the development of the data-sharing platform, through three focus groups organized around the themes of usability, design, and functionality. The Web-based platform complies with the American Disability Act and is designed with ease of use in mind so that users, with a few clicks of the mouse, can conduct univariate and bivariate analyses. Advisory board members’ input shaped the final design of the platform data display; their preference for bar graphs as opposed to infographics led to the inclusion of bar graphs for displaying data.
Curriculum
We adapted the University of California, Los Angeles, Center for Health Policy Research Data and Democracy curriculum, a well-established curriculum for teaching community members principles of research, to train TSP participants.1 We developed new exercises using the Web-based platform and included new material on the history of research among justice-involved individuals, the importance of research in criminal justice reform, and the interplay between CBPR and PCOR. By design, we 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.
Capacity Building
Through site visits and a three-day training retreat in February 2017, team members participated in the curriculum and used the Web-based platform to formulate research questions and hypotheses about the health of justice-involved individuals. We further reinforced training concepts covered during the retreat through monthly webinars, including developing specific aims, stakeholder mapping and engagement, and using research for advocacy. Teaching research methods to a group with varying degrees of computer and data literacy and exposure to research proved challenging, but we aimed to strike a balance between research novices and seasoned researchers.
Inclusive Research Design
The final activity was an in-person meeting during which teams shared their patient-centered research topic and sought group feedback to refine their project (Figure B, available as a supplement to the online version of this article at https://www/ajph.org).
EVALUATION
The primary outcome of TSP was to be able to engage this diverse group of stakeholders in the health of justice-involved people and support their use of the Web-based platform and CBPR and PCOR training to develop new research ideas that are patient driven and responsive to the needs of health care providers for implementation. Patients were interested in both seeing the data generated by the studies they participated in and designing new areas of research. This strategy could be used by other researchers to train and engage justice-involved people in research.
ADVERSE EFFECTS
The intervention was limited by the small number of participants, potential bias in the selection of TCN sites and participants, limitations of the instruments used to measure data literacy, and the short time frame between the intervention and assessment.
SUSTAINABILITY
The data-sharing platform and training materials are accessible through a secure login on the TCN Web site (www.transitionsclinic.org) so that TCN stakeholders can continue to access de-identified data. Anticipated improvements to the data-sharing platform include integrating publicly available data and creating the ability for patients to compare their own data to the entire TCN. Further, other researchers are using the Web-based data-sharing prototype to share data from a National Institutes of Health–funded study to improve equity in research.7
PUBLIC HEALTH SIGNIFICANCE
TSP sought to shift the traditional research paradigm to an equitable inclusion of those directly affected by mass incarceration in the design of health interventions. The project integrated community-engagement principles into the development of a curriculum, data-sharing platform, and TCN team capacity-building activities. As a result, justice-involved patients traditionally marginalized in the research process engaged in the analysis and interpretation of their own data and used that information to design new research.
ACKNOWLEDGMENTS
The Share Project was funded by the Patient-Centered Outcomes Research Institute (PCORI; award 1079-YU) and the Yale Center for Clinical Investigation. The Transitions Clinic Network was supported by the Department of Health and Human Services, Centers for Medicare and Medicaid Services (grants 1CMS331071-01-00 and 1C1CMS331300-01-00). J. E. M.’s work on this project was supported in part by the National Institute of Mental Health (awards T32MH020031 and P30MH062294) and the National Institute on Drug Abuse (award R25DA037190).
Note. The statements presented in this article are solely the responsibility of the authors and do not necessarily represent the views of PCORI, its Board of Governors, or Methodology Committee; the National Institute of Mental Health or the National Institutes of Health; or the US Department of Health and Human Services or any of its agencies. The research presented was conducted by the awardee. Findings might or might not be consistent with or confirmed by the findings of the independent evaluation contractor.
CONFLICTS OF INTEREST
No conflicts of interest.
HUMAN PARTICIPANT PROTECTION
The project was approved by the Yale University institutional review board.
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