Despite the growth and expense associated with the US criminal justice system, and emerging evidence that incarceration is associated with poor health and high health care costs, a dearth of studies exists assessing the health of currently or formerly incarcerated persons. We analyzed the content of leading publically available national health data sets and found no data sets that could be used to assess the health of currently incarcerated persons. Additionally, while 12 of 36 (33%) data sets collected information related to incarceration, only 3 (8%) could be used to assess the health of formerly incarcerated individuals.
There are many reasons that national health data sets might not include currently or formerly incarcerated subjects. Because correctional health care has traditionally been isolated from mainstream health care, and the impact of incarceration on lifetime health care costs and outcomes is an emerging area of inquiry, investigators could be unaware of the importance of understanding the health and health care needs of this population. Logistical challenges to conducting research either in prisons and jails or with the formerly incarcerated may also serve as deterrents. For example, requirements of prisoner representation on Institutional Review Boards (IRBs), the approval of the IRB by the Office of Human Research Protections, and the lengthy application process for a Certificate of Confidentiality may remain significant barriers to including research subjects in the criminal justice system (either incarcerated or on parole). In 2006, however, the Institute of Medicine (IOM) issued new ethical guidelines that clarified the standards for health research related to prisoners, recognizing that “access to research may be critical to improve the health of prisoners.”32
The IOM guidelines should increase the ease of understanding how to conduct ethically sound research and, as others have noted, create an entrée for researchers to engage incarcerated populations in minimal risk clinical studies.33
Improved guidelines, and calls to include currently and formerly incarcerated persons in more health research, are important because such studies could add to our understanding of rising health care costs, variations in risk for certain medical conditions, and unexplained health disparities. For instance, over the past decade the unsustainable costs of prison health care have led states across the nation to reexamine their parole and sentencing policies.21,34
The potential for a significant budgetary shift from the criminal justice system to Medicare and Medicaid has been observed,35
yet the specific economic burdens associated with caring for current and former prisoners remain unknown. Additionally, several studies report higher rates of hypertension in incarcerated persons.6,16,19,29
Wang et al. used the CARDIA data to show that incarceration is an independent predictor of hypertension among black men.28
Yet, the longitudinal Cardiovascular Health Study (CHS), which aims to “identify factors related to the onset and course of coronary heart disease and stroke,”36
does not assess subjects’ history of incarceration in its surveys and drops subjects who become incarcerated during participation. Finally, excluding incarcerated populations from studies of minority health could lead to biased or under-powered results given the disproportionate representation of minorities in the criminal justice system.33
Yet, we found that most data sets focused on health disparities did not include incarceration-related information.
We propose three basic mechanisms to significantly expand the availability of incarceration-related data for generalist health researchers. First, population-based studies of community care that likely include incarcerated persons should record the incarceration status of all participants. This basic step would generate a wealth of national health and cost data, particularly for prisoners with chronic medical conditions who are likely to require ongoing care after release. Second, studies that already obtain data about incarceration history should code it in a manner that can be used for analysis. Examples of this include data sets that obtain subjects’ incarceration histories but do not differentiate them from other legal or social problems such as homelessness or having been institutionalized in another setting such as a nursing home. Here, small changes to questions or coding mechanisms could enable researchers to study the associations between incarceration and health. Third, studies that already ask about a subject’s history of incarceration should add additional questions to account for potentially significant factors like the type (e.g., jail, prison, parole) and length of incarceration. Only one data set in our review, Add Health, exemplified such a comprehensive approach to recording incarceration-related data. As a result, Add Health has been used by researchers to understand incarceration’s impact on overall health.37,38
With the addition of a few carefully selected questions, other data sets (such as CARDIA and MIDUS) could join Add Health as leading sources of high-impact incarceration-related health research.
Several limitations should be considered when interpreting our findings and recommendations. First, not all national health data sets were considered in this review. Rather, we focused on the large, representative sample found in the SGIM Dataset Compendium, an expertly compiled and widely used source of data for secondary analyses among leading health care researchers.31
By precluding data sets outside of the SGIM compendium from our analysis, we may have omitted data sets from the fields of criminology or sociology that include health measures. While this may be seen as a limitation, we focused our evaluation on leading national health data sets because they specifically include robust health measures that could be used by health researchers to understand associations between health and incarceration. By taking this approach, we were able to make specific suggestions to improve the availability of criminal justice-related data for leading health-related research. Moreover, because of their important focus on other criminal justice data, criminologic or sociologic data sets generally include only limited health data. For example, we did not analyze the Survey of Inmates in State and Federal Correctional Facilities series, a data set used in the study of prisoner health from the Bureau of Justice Statistics (BJS),39
but with limited health measures and a primary focus on criminal justice data. Finally, because some data sets in our review used administrative data collected by health care providers, particularly those likely to include current prisoners (Table ), we acknowledge that in some cases our recommendations may fall outside the scope of what study investigators can easily accomplish. Thus, we hope that our findings will have relevance not just to researchers and investigators, but also to hospital data administrators and policy makers as well.
Despite increasing evidence that currently and formerly incarcerated persons are in worse health and may generate higher health care costs than the general public, relatively few studies have been conducted to investigate the associations between incarceration and individual or public health. Our study highlights the extent to which relevant data are absent from most of the widely used and easily accessible national health data sets. Increasing the amount of available incarceration-related data could inform further studies and policies aimed at controlling health care costs, mitigating risk for chronic conditions among vulnerable populations, and narrowing demographic health disparities in outcomes and delivery.