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Individuals released from carceral facilities have high rates of hospitalization and death, especially in the weeks immediately after their return to community settings. During this transitional process, individuals leaving incarceration are expected to engage with multiple providers working in separate, complex systems, including health care clinics, social service agencies, community-based organizations, and probation and parole services. This navigation is often complicated by individuals’ physical and mental health, literacy and fluency, and socioeconomic status. Personal health information technology, which can help people access and organize their health information, could improve the transition from carceral systems to the community and mitigate health risks upon release. Yet, personal health information technologies have not been designed to meet the needs and preferences of this population nor tested for acceptability or use.
The objective of our study is to develop a mobile app to create personal health libraries for individuals returning from incarceration to help bridge the transition from carceral settings to community living.
Participants were recruited through Transitions Clinic Network clinic encounters and professional networking with justice-involved organizations. We used qualitative research methods to assess the facilitators and barriers to developing and using personal health information technology for individuals returning from incarceration. We conducted individual interviews with people just released from carceral facilities (n=~20) and providers (n=~10) from the local community and carceral facilities involved with the transition for returning community members. We used rigorous rapid qualitative analysis to generate thematic output characterizing the unique circumstances impacting the development and use of personal health information technology for individuals returning from incarceration and to identify content and features for the mobile app based on the preferences and needs of our participants.
As of February 2023, we have completed 27 qualitative interviews with individuals recently released from carceral systems (n=20) and stakeholders (n=7) who support justice-involved individuals from various organizations in the community.
We anticipate that the study will characterize the experiences of people transitioning from prison and jails to community settings; describe the information, technology resources, and needs upon reentry to the community; and create potential pathways for fostering engagement with personal health information technology.
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In a typical year, more than 10 million people cycle in and out of prisons and jails. Incarcerated individuals predominantly come from racial and ethnic minority groups and are of low-income status [
During incarceration, people reside in a highly controlled environment with constitutionally guaranteed access to health care services and little or no autonomy or opportunity to gain skills in self-management of medications, exercise, or diet [
Personal health information technologies are untapped resources that could facilitate improved access and organization of information, especially in the period after release. In addition, personal health information technologies increase patient engagement in health and self-efficacy efforts by organizing health information, improving communication with providers, and coordinating care. Research on personal health information technologies has mostly focused on patient portals (electronic personal health records tethered to institutional electronic health records), which has helped improve adherence to medications and quality measures for chronic conditions [
We will use qualitative methods and conduct semistructured interviews with people just released from jails or prisons (anticipated n=20) and community and correctional stakeholders (anticipated n=10) to understand the individual, organization, and systemic factors that shape people’s access to health and technology supports after release from incarceration. The following study protocol was reviewed and approved by the Yale University Human Subjects Research Committee Institutional Review Board (200028862). The research will be conducted in partnership with a primary-care clinic that cares for people who have chronic health conditions and histories of incarceration. The clinic, located in the northeastern United States, is part of the Transitions Clinic Network (TCN), a national network of primary-care clinics that integrates community health workers (CHWs) who have lived experience of incarceration into clinical teams [
One team member (MS), who is a CHW in the clinic, will recruit potential participants through TCN clinic encounters and professional networking with justice-involved organizations. To be eligible for this interview, patients need to be at least 18 years old, carry a diagnosis of at least 1 chronic disease (eg, diabetes, heart disease, kidney disease, arthritis), be English-speaking, and have been released from jail or prison within the past year.
Team members (MF, MCB, MS, KW) will use professional networks and snowball sampling to recruit stakeholder participants from social service agencies, community organizations, and carceral facilities. To be eligible for this portion, participants need to have direct experience working with people who have recently been released from incarceration.
All interested and eligible people will be given study-informed consent forms with detailed information about the purpose of the study, their rights as research participants, and contact information for further questions. A team member will schedule in-person interviews in physical or web-based spaces that are convenient for participants. All participants, both formerly incarcerated individuals and community stakeholders, will receive a US $50 gift card at the end of the interview in appreciation for their time.
The team developed 2 interview guides using the constructs of the technology acceptance model and input from stakeholders who are part of the TCN professional network (see
What experiences did you have with technology before incarceration? During incarceration?
Describe some of the initial things you needed to figure out when you were released.
How do you figure out what to do next?
How do you organize your information?
Participants will also be asked to give feedback on wireframe models of a personal health library and share examples of information they would like to track or manage within a digital app, such as their identification card or address of residency prescription medications, or applications for education, employment, or financial assistance.
The stakeholder interview guide seeks to obtain information about technology access and information-seeking behaviors from a service provider perspective. Questions include:
What kind of information do you collect and store on individuals who are in or just released from correctional settings?
What type of information do you want to help you with your ability to promote health for the individuals you work with?
What are your concerns about clients using technology to access their health information?
The team will iteratively refine both interview guides throughout data collection to incorporate emergent ideas into future interviews.
Three researchers will serve as interviewers for the study: 2 are experienced qualitative researchers (MF, MCB) while the third will be trained as part of the larger grant aims (MS). All interviews will be audio-recorded and professionally transcribed. Identifying information will be removed from the transcript to preserve participant confidentiality.
Four team members (MF, MCB, MS, KW), including the 3 interviewers, will serve on the analytic team. This structure will support a closeness with the data and a collaborative analytic process [
The analysts will complete summaries for each interview independently, with at least 2 analysts assigned to each transcript. They will then convene as a group to discuss their work and further explore the data through questions and comparisons with other study interviews, field experiences, and research findings. The team will record their progress, including ongoing thematic analysis through memoing and visualizations [
Following rapid qualitative analysis, the team will conduct interpretation sessions (led by TM) and develop an affinity diagram [
The institutional review board at Yale School of Medicine approved the study and all participants gave informed consent (2000028862).
As of February 2023, we have completed 27 interviews with people just released from carceral systems (n=20) and stakeholders (n=7). The data analysis derived from the interviews will inform the development of user requirements, identify facilitators and barriers to personal health library use with our population of interest, capture emergent needs and priorities during the transition process from correctional to community settings, and build a comprehensive codebook for further analysis. The interviews with people with a recent history of incarceration have elucidated a wide range of social and health services that they interact with upon release, such as identity verification and obtainment of identity documentation, 211 services (information and referral service organization in Connecticut servicing individuals with utility assistance, food, housing, child care, after school programs, elder care, and crisis intervention), the Department of Social Services that delivers and funds a wide range of programs and services as Connecticut's multifaceted health and human services agency, and the Department of Mental Health and Addiction Services, whose purpose is to promote and administer comprehensive, recovery-oriented services in the areas of mental health treatment and substance abuse prevention and treatment throughout Connecticut [
People recently released from carceral settings face a unique set of challenges when they return to the community [
Millions of individuals leave jails and prisons each year, and in this transition, many experience poor health outcomes. Personal health information technologies, which are currently underutilized, may positively impact their health by improving individual self-efficacy and by facilitating communication between the health system and social service providers, and control of information by patients themselves. To improve transitions of care from carceral to the community health system, we need to have targeted and feasible solutions to capitalize on the benefits of personal health information technologies.
Interview guide for stakeholders.
Interview guide for formerly incarcerated persons.
Peer-review reports from the Biomedical Informatics, Library and Data Sciences Review Committee - National Library of Medicine (National Institutes of Health, USA).
community health worker
Transitions Clinic Network, Connecticut
The authors would like to thank the study participants for generously sharing their experiences with our team. The authors would like to acknowledge the staff at the TCN-CT (Transitions Clinic Network, Connecticut) for supporting participant recruitment, members of the Consumer Health Informatics Lab at Yale University, including Mary Peng, Amanda Levi, Meera Swaminath, Kristal Zhou, and Shamima Afrose for their contribution to the design and future usability testing of the personal health library app for people with a history of incarceration; and June Weiss, MA, for her support on research administration. Lastly, we would like to acknowledge Douglas Redd, PhD, David Sierras, and Jerry Smart, Jr, CHW, 3 team members who passed away since the inception of this study. This study was supported by funding from the National Library of Medicine (R01LM013477).
The data sets generated during and analyzed during the current study are not publicly available due to ongoing data collection from participants but may be made available from the corresponding author on reasonable request.
TM is a member of the Clinical Diversity Advisory Board at Woebot Health as well as the Digital Wellbeing Advisory Board at Peer Health Exchange. TM is also the associate editor of the