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Learn more: PMC Disclaimer | PMC Copyright Notice J Gen Intern Med . Author manuscript; available in PMC: 2026 Apr 16. Published in final edited form as: J Gen Intern Med. 2026 Jan 12;41(7):1982–1984. doi: 10.1007/s11606-026-10184-1 Search in PMC Search in PubMed View in NLM Catalog Add to search Left Behind in Electronic Access: Control Over Personal Health Information While Incarcerated Lawrence A Haber Lawrence A Haber , MD 1 Division of Hospital Medicine, Denver Health and Hospital Authority, Denver, CO, USA; 2 Department of Medicine, University of Colorado, Aurora, CO, USA; Find articles by Lawrence A Haber 1, 2 , Hans P Erickson Hans P Erickson , JD 3 Sonata Law Firm LLC, Albuquerque, NM, USA; Find articles by Hans P Erickson 3 , Justin Berk Justin Berk , MD, MPH, MBA 4 Department of Medicine and Pediatrics, Alpert Medical School at Brown University, Providence, RI, USA; Find articles by Justin Berk 4 , Brie A Williams Brie A Williams , MD, MS 5 Division of Health Equity and Society, Department of Medicine, University of California San Francisco, San Francisco, CA, USA Find articles by Brie A Williams 5 Author information Article notes Copyright and License information 1 Division of Hospital Medicine, Denver Health and Hospital Authority, Denver, CO, USA; 2 Department of Medicine, University of Colorado, Aurora, CO, USA; 3 Sonata Law Firm LLC, Albuquerque, NM, USA; 4 Department of Medicine and Pediatrics, Alpert Medical School at Brown University, Providence, RI, USA; 5 Division of Health Equity and Society, Department of Medicine, University of California San Francisco, San Francisco, CA, USA Author Contribution Dr. Haber provided the main conceptual focus for the perspective, wrote the manuscript, and approved the final draft for submission. Mr. Erickson provided revisions to the manuscript and approval of the final draft. Dr. Berk provided revisions to the manuscript and approval of the final draft. Dr. Williams provided revisions to the manuscript and approval of the final draft. ✉ Corresponding Author: Lawrence A. Haber, MD; Division of Hospital Medicine, Denver Health and Hospital Authority, Denver, CO, USA ( [email protected] ). Issue date 2026 May. PMC Copyright notice PMCID: PMC13081736 NIHMSID: NIHMS2162611 PMID: 41526621 The publisher's version of this article is available at J Gen Intern Med Abstract Patients increasingly expect timely, secure access to health information, a right reinforced by the Health Insurance Portability and Accountability Act and expanded under the 21st Century Cures Act. Yet millions of individuals receiving care in jails and prisons remain excluded from these advances. Incarcerated populations bear a disproportionate burden of chronic disease, psychiatric illness, and substance use disorders. For many, incarceration presents consistent contact with healthcare, though access to personal medical records during and after detention remains limited. Although the Cures Act prohibits most forms of information blocking, carceral practices prevent patients from viewing records, restrict communication with providers, and maintain electronic health systems that do not integrate with community platforms. Existing digital tools in prisons—such as TRULINCS, JPay, and fee-based tablets—facilitate communication and commerce but rarely support healthcare engagement. Incarcerated patients are excluded from digital health rights afforded the broader population, exacerbating disparities and complicating reentry into communities. Policy reforms should enforce Cures Act provisions within carceral systems, mandate interoperable EHRs that follow patients across settings, and leverage emerging tablet technologies to provide secure patient portals. Aligning correctional health practices with community standards would promote autonomy, facilitate continuity of care, and support rehabilitative and public health goals. INTRODUCTION In modern healthcare, patients have increasing control over their own health data, with assurance that sensitive information is both protected and readily accessible. Such expectations stem from regulations including the Health Insurance Portability and Accountability Act (HIPAA) and the 21st Century Cures Act, which safeguard patient privacy and prioritize transparency in health records. Yet the millions of Americans who receive their care in jails and prisons remain largely unable to access their personal health information or electronic healthcare communication. More than two million people are incarcerated in the USA, with over 10 million more cycling through jails yearly. The incarcerated population experiences a higher prevalence of medical, psychiatric, and substance use disorders relative to the community. Inside carceral facilities, some people receive healthcare for the first time, but for others imprisonment exacerbates existing health issues and undermines their ability to manage healthcare needs. Whether carceral care comprised a single intake evaluation or decades of chronic disease management, many incarcerated patients will never see their medical records during detention or after release. Access to records is important for all patients, though the nature of carceral medicine makes patient access to health information a unique challenge. Here we examine the burden of illness among the incarcerated population, policies and practices impeding patients’ access to their health data, practical barriers to electronic access within carceral settings, and opportunities to align carceral access to personal healthcare records with community norms. THE BURDEN OF ILLNESS AMONG THE INCARCERATED POPULATION Incarceration is linked to excess morbidity and mortality, including a 2-year decline in life expectancy for each year in prison. 1 Up to 60% of those imprisoned have low health literacy, associated with decreased confidence taking medications and increased emergency department utilization upon release. 2 Within prisons, 20% of the population is considered geriatric and many experience “accelerated aging,” developing chronic health conditions on average a decade earlier than community counterparts. 3 Medical treatment for individuals in jails and prisons commonly occurs on site, though when medical needs exceed available resources, patients are transferred to community hospitals where they experience exceptions to privacy, decision-making, and coordinated transitions of care. 4 Carceral care is paid primarily through county, state, or federal budgets, costing billions annually, with scant oversight or standardization across facilities. 5 , 6 Nearly all incarcerated people eventually return to their community. Absent insurance, access to affordable healthcare, or insight into their medical conditions, these individuals are at increased risk of post-release opioid overdose death, 7 emergency services utilization, 8 hospitalization, and untreated medical conditions that impair their ability to build social capital and successfully reintegrate into communities. THE 21ST CENTURY CURES ACT Patient rights to access medical records were codified under HIPAA in 1996. The Health Information Technology for Economic and Clinical Health (HITECH) Act in 2009 then incentivized the adoption of electronic health records, encouraged the development of a nationwide health information infrastructure, and increased penalties for HIPAA violations. Most recently, the 21st Century Cures Act in 2016 aimed to make access easier and virtually unrestricted—ensuring health systems do not prevent patient access or exchange of health information stored in electronic records. The Cures Act contained no explicit exceptions to information blocking for incarcerated individuals unless records are compiled in anticipation of civil, criminal, or administrative action. Practices within carceral facilities, however, rarely enable patient access to medical records while imprisoned. For example, within the Federal Bureau of Prisons (BOP), the nation’s largest carceral system, a patient may review their records by submitting a request to correctional staff. Any records containing subjective evaluations and opinions relating to the individual’s treatment, including outpatient, hospital, and operative notes (documents included in the Cures Act as categories that must be immediately available to patients through a secure online portal), are provided only after BOP Health Services reviews whether the release of information would present harm to the patient or others. Far from being readily accessible, records are disclosed to incarcerated patients only after filtration through carceral administrators. When receiving care in community medical centers, non-incarcerated patients are routinely provided detailed information about future treatment plans, follow-up appointments, and directed to resources on how to access their electronic health record. For patients in custody, however, providers adhere to carceral security policies, which often prohibit such counseling. 4 There is no clear data to support the idea that knowledge of advanced medical appointments facilitates security breaches, and those detained in jails or prisons are regularly made aware of other plans pertaining to movement, such as to or from court. As a result, incarcerated patients may not know what care they are supposed to receive going forward or whether they are receiving appropriate and timely treatment, which undermines their ability to advocate for themselves. A core component of the Cures Act is interoperability between electronic health systems, so that patients may access their health data and healthcare professionals can exchange information across systems and technologies. The BOP utilizes an electronic health record called the Bureau Electronic Medical Records (BEMR) within their facilities, which allows incarcerated patients to access co-pays and prescription refill requests, enables administrative functions such as public health reporting, provides information to the judiciary, and monitors the quality of care provided. 9 The BEMR does not operate or communicate outside the carceral system, nor is there an electronic point of access for patients to examine their records. Electronic medical records created in prison stay in prison. PRACTICAL LIMITATIONS TO ELECTRONIC ACCESS For those in the community, online patient portals represent patients’ primary digital touch points with the healthcare system and a means to access personal health information, anticipate appointments, and communicate with healthcare professionals. For incarcerated patients, electronic communication is strictly limited and access to electronic health records pertaining to treatment provided in or out of custody is generally unavailable. Electronic communication within prison generally occurs via rudimentary tools. The BOP uses the fee-based Trust Fund Limited Inmate Computer System (TRULINCS) application for email between incarcerated individuals and approved community members. State-run prisons frequently rely on for-profit services such as JPay, which provides money transfer, video visitation, parole payment, and limited email at $0.40 per message. With average prison wages far less than a dollar per hour, 10 many lack the financial means to pay for basic messaging. Carceral institutions increasingly provide fee-based access to electronic services through tablets, including monitored email or video visits, movies, music, games, educational programming, and commissary account transactions. However, these devices typically do not allow access to health information platforms. Medical questions that a non-incarcerated patient might easily address through a patient portal or online message instead go unaddressed, diminishing the ability of incarcerated patients to engage with and take control of their healthcare needs. CONCLUSION Incarcerated individuals have been largely excluded from advances in policy and technology that enable patient control over personal health information through electronic healthcare access. Reforms are needed to ensure that incarcerated individuals have access to their health information in a manner better approximating community standards. The National Commission on Correctional Health Care has called for the use of electronic health records in carceral facilities that partner with state, regional, and local health information exchanges, so electronic data can be shared as an individual transitions to care in the community. 11 Federal mandates, such as Health and Human Services’ Culturally and Linguistically Appropriate Services standards, should be revised to provide guidance on how equity applies to digital health, especially important among carceral populations with limited access and low health literacy. 12 Cures Act regulations regarding information blocking should be enforced within carceral systems and deviations should require explanation, so that those detained are provided platforms to communicate with practitioners and access their electronic medical records without bureaucratic delay or prohibitive fees by prison wage standards. The growing availability of tablets in carceral facilities should be leveraged to provide functionality that mimics community healthcare systems, where patients can manage appointments, seek medication refills, and review clinical reports. Such changes would facilitate an international best practice known as “normalization”— the goal of which is to ready people for community reentry by approximating life in the community as much as possible within the prison environment. By facilitating electronic access and engagement, we can empower incarcerated individuals to take control of their healthcare, support rehabilitative goals, and facilitate safer community reentry. Conflict of interest Dr. Williams receives funding from the National Institute on Aging, Aging Research in Criminal Justice Health Network, Grant: R24AG065175. Dr. Berk receives funding from the National Institute on Drug Abuse, Grant: K23DA055695. 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