Jail-Based Data-to-Care to Improve Continuity of HIV Care: Perspectives and Experiences from Previously Incarcerated Individuals

Abstract

Incarceration can disrupt retention in HIV care and viral suppression, yet it can also present an opportunity to reengage people living with HIV (PLWH) in care. Data-to-care (D2C) is a promising new public health strategy that uses HIV surveillance data to improve continuity of care for PLWH. The goal of this study was to examine perspectives on and experiences with D2C among PLWH who had recently been incarcerated in jail. Semistructured, qualitative interviews were conducted with 24 PLWH in community and prison settings about (1) knowledge of and experiences with D2C and (2) attitudes about implementing D2C in the jail setting. Participants who had been contacted for D2C described their interactions with state public health workers favorably, although almost half were not aware that the state performs HIV surveillance and D2C. While most participants indicated they would welcome assistance from the state for reengaging in care, they also framed retention in care as an individual responsibility. Most participants supported the idea of jail-based D2C. A vocal minority expressed adamant opposition, citing concerns about the violation of privacy and the threat of violence in the jail setting. Findings from this study suggest that D2C interventions in jails could be beneficial to reengaging PLWH in care, and acceptable to PLWH if done in a way that is sensitive to the needs and concerns of incarcerated individuals. If implemented, jail-based D2C programs must be designed with care to preserve privacy, confidentiality, and the autonomy of incarcerated individuals.

Introduction

About one in seven HIV-infected adults in the United States is incarcerated each year,¹ most often in jail. Incarceration can disrupt retention in HIV care and viral suppression,^2–4 which are critical to maintaining individual health and preventing HIV transmission. However, incarceration can also present an opportunity to reengage people in HIV care, particularly when people living with HIV (PLWH) are released from jail into the community.^5,6

Data-to-care (D2C) is a relatively new public health approach, consistent with the U.S. National HIV Strategy that aims to reengage PLWH in the community in HIV care and increase viral suppression.⁷ All U.S. states have a funding mandate to implement D2C, which uses HIV surveillance data to identify PLWH who are not in care and link them to appropriate medical and social services.^8,9 Such linkage may be facilitated by state or local health department outreach workers or the individual's HIV provider of record. While about half of PLWH confirmed to be out of care return to care because of D2C activities,^10–12 D2C may be more effective in facility-based interventions, such as county jails, due to challenges in locating out-of-care individuals in the community.¹³

Previous studies of stakeholders' views on D2C indicate general support for D2C among medical providers, policy stakeholders, researchers,^12,14,15 and a small number of PLWH.¹² Our own study of expert stakeholders found support for extending D2C programs to jails.¹⁶ However, PLWH who have been recently incarcerated in jail may have a unique perspective on D2C programs due to perceived HIV stigma among incarcerated individuals^17–20 and correctional staff,²⁰ as well as privacy concerns among PLWH while incarcerated.^17,19 The goal of this study was to examine perspectives on and experiences with D2C among PLWH who had recently been incarcerated in jail.

Materials and Methods

Overview

Participants were recruited to participate in a semistructured interview between March 2019 and March 2020 in community and prison settings in North Carolina. We recruited from the state prison system to increase the likelihood that participants would have been incarcerated in jails from across the state; we recruited from the community to foster participants' willingness to speak openly about their incarceration. We decided against recruiting from jails because of the logistical challenges of quickly identifying and enrolling these individuals during relatively short jail incarcerations. Eligible participants were fluent in English, 18 years and older, HIV positive, and either transferred from jail to prison, or released from jail into the community in the last 6 months. Initially, we employed a convenience sampling strategy. We subsequently employed purposive sampling to enroll a balanced number of men and women. Enrollment was ultimately curtailed by the COVID-19 pandemic before we achieved a gender-balanced sample. The study protocol was approved by the Wake County Human Services Institutional Review Board, the North Carolina Department of Public Safety, and the Institutional Review Board of the University of North Carolina at Chapel Hill.

Community sample: recruitment and data collection

Participants were recruited through partnerships with a local HIV case management organization and a local health department HIV clinic, both of which serve PLWH with histories of jail incarceration. Representatives from each organization screened potential participants for eligibility. Individuals who fulfilled study criteria were informed about the study and either given contact information for study staff or provided permission for study staff to contact them directly. Research staff spoke with prospective participants by telephone to verify eligibility, confirm interest in the study, and schedule interviews.

Two researchers with training in qualitative interviewing and research experience with incarcerated individuals conducted all interviews. Interviews used a semistructured interview guide that included questions about demographics, HIV care in jail, experiences with HIV surveillance and D2C in the community, and perspectives on potential uses of these strategies in jails. Participants were shown a set of infographics to help describe existing HIV surveillance and D2C procedures in North Carolina and a proposal for how surveillance and D2C practices could be extended to jails (Supplementary Table S1). We did not discuss the possible implementation of D2C in the state prison system because the state prison system conducts mandatory HIV testing for all new entrants; therefore, the D2C strategy of using surveillance data to identify out-of-care PLWH would be redundant. Interviews were conducted in private with audio recording and later transcribed. Participants received a $35 gift card as compensation.

Prison sample: recruitment and data collection

Recruitment occurred at two prisons, one for men and one for women, with the assistance of a prison-based infectious disease provider. The provider screened potential participants and assessed interest in the study. If interested and eligible, potential participants were referred in person to study team staff. Interviews were conducted in private offices in the prison clinics and addressed the same domains as those described for the community sample. Only the participant and interviewers were present. Prison administrators did not authorize audio recording. Therefore, two interviewers worked in tandem; one conducted the interview while the other recorded notes. Direct quotations were recorded in the notes whenever possible. After each interview, the interviewers discussed key points and developed comprehensive summaries of the interview. Prison participants were prohibited from receiving compensation.

Data analysis

Interview transcripts (community sample) and summaries (prison sample) were analyzed using Dedoose qualitative analysis software.²¹ We identified 24 thematic codes, and codes were organized into a structured coding dictionary. Four researchers coded four transcripts, and nine were coded by two coders. Discrepancies were reviewed and resolved by all coders and the coding dictionary was updated as needed to reflect necessary definitional changes. The remaining transcripts were coded by a single coder. We then reviewed relevant coding reports to identify salient subthemes and patterns for further analysis.

Results

Our sample included 10 participants from the community (ID numbers beginning with 02) and 14 from the prison site (ID numbers beginning with 03). Most participants were male (n = 16) and Black (n = 19). Participants' mean age was 44, and mean number of years since diagnosis was 16. Participants had been incarcerated in 22 distinct North Carolina jails distributed across the state, as well as jails in 3 other states. The mean number of jail incarcerations since diagnosis was 15, and half of the participants indicated that they had gone without routine HIV care for any length of time since their initial diagnosis (Table 1). Reasons identified for being out of care included depression, substance abuse, unpleasant side effects of medication, lack of social support, lack of transportation, incarceration, and stigma. Below, we describe participants' perspectives in five key domains: (1) knowledge of surveillance and D2C in the community; (2) personal experiences with surveillance and D2C in the community; (3) attitudes toward D2C in the community; (4) attitudes toward extending D2C to jails; and (5) practical considerations for implementing D2C in jails.

Table 1.

Participant Demographics

Characteristic	Community, n = 10 (%)	Prison, n = 14 (%)	Total, n = 24 (%)
Gender
Cisgender women	4 (40)	1 (7.1)	5 (20.8)
Cisgender men	4 (40)	12 (85.7)	16 (66.7)
Transgender women	2 (20)	1 (7.1)	3 (12.5)
Age
18–24	0	1 (7.1)	1 (4.2)
25–34	2 (20)	3 (21.4)	5 (20.8)
35–44	3 (30)	2 (14.3)	5 (20.8)
45–54	5 (50)	5 (25.7)	10 (41.7)
55–64	0	3 (21.4)	3 (12.5)
Race/ethnicity
Black/African American	8 (80)	11 (78.6)	19 (79.2)
White	1 (10)	2 (14.3)	3
Hispanic/Latino	0	0	0
American Indian or Alaska Native	0	1 (7.1)	1
Mixed race	1 (10)	0	1 (4.2)
Education
Some high school	2 (20)	0	2 (8.3)
High school or GED	7 (70)	10 (71.4)	17 (70.8)
Some college	0	2 (14.3)	2 (8.3)
Degree from professional, technical, or trade school	1 (10)	1 (7.1)	2 (8.3)
Unknown	0	1 (7.1)	1 (4.2)
Years living with HIV
<5	0	3 (21.4)	3 (12.5)
5–10	2 (20)	3 (21.4)	5 (20.8)
11–20	5 (50)	2 (14.3)	7 (29.2)
21–30	3 (30)	6 (42.9)	9 (37.5)
No. of jail stays postdiagnosis
0	0	1a (7.1)	1 (4.2)
1–5	4 (40)	8 (57.1)	12 (50)
6–10	1 (10)	2 (14.3)	3 (12.5)
>10	5 (50)	3 (21.4)	8 (33.3)
No. of prison stays postdiagnosis
0	4 (40)	0	4 (16.7)
1	1 (10)	3 (21.4)	4 (16.7)
2–5	4 (40)	8 (57.1)	12 (50)
>5	1 (10)	3 (21.4)	4 (16.7)
Ever out of care
Yes	6 (60)	6 (42.9)	12 (50)
No	3 (30)	7 (50)	10 (41.7)
Unknown	1 (10)	1 (7.1)	2 (8.3)

^aOne participant was diagnosed in prison and interviewed during this prison stay.

Knowledge of surveillance and D2C in the community

Ten participants were not aware that the state department of health performs HIV surveillance and D2C. Some participants reasoned that surveillance activities must have begun after they were initially diagnosed. For example, one participant said: “That wasn't a thing in ‘89’” (3001, 49-year-old man). For others, a lack of knowledge of surveillance and D2C reflected the fact that they had maintained continuous care. One participant expressed disbelief: “I don't believe the state health department go looking for people.” (2001, 51-year-old man). This participant went on to offer “good luck” to state outreach workers because “how you gonna find someone who don't have a cell phone or an address?” An additional participant (3007, 60-year-old man) indicated that he knew something was happening to his personal health information but was unaware of the specific details.

Experiences of surveillance and D2C in the community

The North Carolina state health department deploys outreach workers, known as bridge counselors, to contact PLWH and support their reengagement with HIV care. Among the 12 people who reported having gone without routine care for a period of time since their initial diagnosis, 7 reported having been contacted by a bridge counselor; another 2 respondents, who did not report being out of care, also reported being contacted by a bridge counselor. Most of participants' interactions with bridge counselors focused on support for accessing HIV care, including scheduling medical appointments, obtaining medications, and connecting participants to other community resources.

Participants generally described D2C interactions favorably. Three reported supportive relationships with health department bridge counselors as a result of D2C. One mentioned that he had developed a strong rapport with the bridge counselor, whom he happened to know from his church: “She actually cared. We had a lot of laughs, and the fact that we were from the same town, it helped out” (2003, 41-year-old man).

Participants' favorable assessments of their interactions with bridge counselors contrasted with their descriptions of interactions with disease intervention specialists (DIS), state public health outreach workers who visit PLWH at the time of HIV diagnosis to conduct contact tracing. Participants typically viewed these interactions as negative or unhelpful, given their overwhelming focus on sexual history, drug use, and other risk behaviors. The same participant quoted above (2003) noted that he would be receptive to public health outreach workers “as long as it's about me and not what you think I've done.”

While interactions with bridge counselors were generally positive, several participants reported being suspicious of initial contact, sometimes expressing surprise that a state health worker knew their address. One participant indicated that a bridge counselor had tried to reach her for years, but that she had resisted this support:

I was ducking her all those many—and finally she got grabs to me, and she's like, “[Participant's name], I'm going to do some other kind of work.” She said, “I have been wanting to get to you.” … The whole time she was trying to help me. I didn't understand. (2004, 35-year-old woman)

Such experiences suggest that suspicion or mistrust may in some cases be a barrier to effective D2C.

Attitudes toward D2C in the community

While many participants were unaware of the state's D2C activities, most participants (18/23) were supportive of D2C once it was explained to them. Most participants perceived this sort of assistance as generally welcome by PLWH, and indicated that they would welcome D2C if they were out of care (20/22). One participant explained, “If something goes wrong with my health, at least the state know and the state can help me and get me resources” (2002, 32-year-old man). Several participants noted that this type of assistance was particularly valuable for vulnerable populations, including those struggling with addiction or mental health problems: “A lot of people get lost out there, especially that's on drugs and they need someone to come and shake ‘em, rattle ‘em up. … I think it's a good thing” (2008, 48-year-old woman).

At the same time, several participants who supported the idea of D2C emphasized that seeking care is ultimately an individual choice, and that it is important not to impose pressure or “go overboard” because then, as one participant put it, he would feel like he was “on probation” (2003, 41-year-old man). Another participant said, “Try to attempt a couple of times but [you] can't force someone to want to live” (3004, 42-year-old man).

Five participants expressed opposition or uncertainty about D2C, primarily due to privacy concerns. One participant suggested that the presence of a state vehicle in one's neighborhood could be stigmatizing (2009, 29-year-old trans woman). Another suggested that it would be “scary” to see a stranger coming to your house (3009, 54-year-old man). A third participant maintained that people have the right to their own decisions and may be out of care because “they just want to die” (3001, 49-year-old man). Two participants expressed concern for the safety of bridge counselors in venturing into the community to track down out-of-care individuals due to the potential for violence.

Attitudes toward extending D2C to jails

Most participants (16/22) were supportive of efforts to extend D2C to jails. One participant described extending D2C to jails as a “step in the right direction…if out of care, talk to them, and help them get back on meds” (3011, 28-year-old man). The overwhelming majority (19/21) felt that PLWH would welcome this sort of assistance. One participant noted that “a lot of people that come to jail are not in their right state of mind…. it's an opportunity to get back on track” (3009, 54-year-old man). Another commented, “Lots of people need the help but are scared to ask for it…because they don't want people to know they have it” (3007, 60-year-old man). This participant also indicated that being incarcerated had helped him to be more consistent with his HIV medication regimen in the past. Several participants specified that they would only support such efforts so long as confidentiality was maintained, or else “it could be dangerous” (2003, 41-year-old man).

A small but vocal minority expressed reservations about implementing D2C in jails, primarily due to concerns about the violation of privacy. One participant suggested that if these individuals wanted to be in care, they would be, and therefore, they should be left alone. Another expressed concerns about the use of private health information for surveillance purposes: “What I tell my doctor about my body and my health is confidential” (2001, 51-year-old man). Several participants put it more forcefully:

“Hell to the no…no privacy…you are going to have a lot of mad people. You are going to have lawsuits.” (3004, 42-year-old man)

“Are you trying to kill people…get people killed…people would find out you got it…not a good idea.” (3014, 54-year-old woman)

Negative attitudes toward D2C in jails did not vary based on the location of previous jail stays. The 6 participants who opposed D2C in jails reported jail stays in 11 unique settings in North Carolina and 1 jail in another state. Moreover, some participants who had stayed in the same jails as those who were opposed to D2C in jails expressed support of the program. Negative attitudes toward D2C in jails did not appear to vary based on whether participants were currently incarcerated, either. Of the six participants who opposed D2C in jails, four were from the prison sample, and two were from the community sample. These numbers are too small to be representative of preferences across the two types of respondents.

When asked specifically to comment on the negative things that might happen as a result of implementing D2C in jails, participants identified a range of unintended consequences, including creating anxiety among incarcerated PLWH, limitation of privileges such as working in the kitchen, and accidental disclosure of HIV status, which they believed could result in mistreatment by jail staff, violence, and stigma. Such perceptions of potential harms were not merely speculative: many participants had themselves experienced accidental disclosure, limitation of privileges, and various forms of mistreatment as a result of their HIV status. On the other hand, seven participants could not think of any negative consequences of D2C in jails.

Practical considerations for implementing D2C in jails

Most participants suggested that extending D2C to jails would be effective if it is done in a way that protected individual privacy in jail and in the community. Most participants thought initial contact should be made by a health department worker or jail medical staff, while the individual was still in jail, or both in jail and after release, because, as one participant put it, “There are so many things going on after release, so [one] need[s] to talk with them in jail” (3004, 42-year-old man). Only a few participants thought the first contact should wait until after release. Participants suggested that the most important intervention for connecting out-of-care PLWH to postrelease care would be to share information about community-based resources. Several participants also said that it would be useful to assist them with setting up an initial appointment for postrelease care.

To ensure confidentiality, several participants suggested that individuals contacted for D2C while incarcerated in jail should meet with health department staff in a private room, and that health department staff should be sensitive to inadvertent disclosure. “If a woman comes in [jail] with a health department badge on, hell no” (3004, 42-year-old man). They also suggested that only jail medical staff—and not correctional officers—should be informed of the individual's HIV status. Participants also indicated that care must be taken if PLWH were contacted in the community, following their release from jail. One participant described those interactions as needing to occur, “Very carefully…seriously, very carefully… may need to walk on eggshells” (3014, 54-year-old woman).

With respect to implementation of D2C in jails, many participants also emphasized the importance of individual responsibility and decision making with respect to D2C, as the following quotations illustrate:

“It's up to me to do it, and they shouldn't have all that responsibility because it's not like they can make me take anything, but they can lead me to make the right decisions.” (2003, 41-year-old man)

“If they don't want the medicine you can't force them to take it.” (3005, 25-year-old trans woman)

These responses underscore that, while D2C may facilitate treatment linkage and help PLWH to overcome structural barriers to care, pursuing treatment for HIV is ultimately an individual choice.

Discussion

D2C represents a promising new public health strategy to improve continuity of care for PLWH. This study adds to a small but growing literature surveying stakeholder views on the acceptability of D2C.^12,14 This is one of the few studies to examine PLWH's perspectives on D2C,¹² and the only study to focus specifically on the experiences of PLWH with a history of incarceration. This study is also the first to examine PLWH's perspectives about implementation of D2C in the jail setting. Such perspectives provide an important complement to ongoing studies of D2C feasibility and efficacy.^22–24

Qualitative findings from interviews with 24 PLWH previously incarcerated in North Carolina jails revealed that most participants supported the idea of extending support to out-of-care PLWH through jail-based D2C. However, a small yet vocal minority expressed adamant opposition, citing concerns about the violation of privacy and the threat of violence or harm in jails from possible inadvertent disclosure. The gravity of these concerns suggests that if implemented, jail-based D2C programs must be designed with care to preserve privacy, confidentiality, and the autonomy of incarcerated individuals.

In addition to sharing perspectives on extending D2C to county jails, participants shared their previous experiences of HIV surveillance and D2C in the community. One striking finding is that participants expressed qualitatively different experiences with state DIS workers and with state bridge workers. This is important because at least some studies do not differentiate between these roles in evaluating programs and activities.^11,25 This finding also suggests that interactions between PLWH and DIS might be improved by including—or emphasizing—linkage to care as a goal of the initial HIV surveillance contact. Given the extent to which negative experiences with state health workers early on in the HIV diagnostic trajectory can influence trust in government assistance, investing in improving these early, sensitive encounters for longer-term payoffs seems particularly worthwhile.

Additionally, the lack of awareness of tracking among 42% of study participants underscores the importance of clearly informing newly diagnosed individuals about HIV surveillance and D2C. While most state health departments routinely do so as part of initial contact tracing, it may be difficult for people faced with a challenging new diagnosis to retain this information over time. HIV providers may help to reinforce this message by reminding patients about HIV surveillance activities during routine clinic visits.

Participants in both the community and prison settings framed retention in care as an individual responsibility, even as they acknowledged multiple structural barriers to staying in care upon release from jail. While most participants indicated that they would welcome assistance from state health workers for linkage to HIV care, many also espoused the idea that if PLWH do not show initiative to proactively engage in care, D2C will be futile. These perspectives are consistent with other studies that have documented the reluctance of socially and economically marginalized groups to rely on social services and assistance.^26,27

Strengths of this study include its descriptive approach to an understudied phenomenon, and its ability to engage a difficult-to-access population on a sensitive topic. The study also has several limitations. First, participants included PLWH who had been recently incarcerated in North Carolina jails. There are about 100 jails in North Carolina and about 3,200 nationwide. Experiences and perspectives among study participants may differ from those of other PLWH who have been jailed elsewhere. At the same time, participants had been incarcerated in over 20% of all jails in the state, set across different geographic regions and with varying facility resources, suggesting that their experiences reflected a wide range of all jail incarcerations in the state. Although the views of study participants, all of whom were currently receiving HIV care or connected to an AIDS service organization, may differ from individuals not in care, half had a history of being disengaged from HIV care and interacting with D2C programs.

Second, restrictions on face-to-face research produced by the COVID-19 pandemic led us to end enrollment before recruiting a sample balanced by gender. We determined that this imbalance was acceptable because the gender distribution in our sample was representative of PLWH in North Carolina²⁸ and people incarcerated in jails.²⁹ Furthermore, we reached thematic saturation in our qualitative analysis,³⁰ and consequently did not expect that additional interviews would lead to new findings.

Finally, our interviews were conducted before the COVID-19 pandemic. The pandemic has likely changed how people view the government's role in disease surveillance and intervention. Whether the pandemic has changed the views of PLWH, who were already subject to disease surveillance and intervention, is unknown.

Conclusion

Findings from this study suggest that D2C interventions in jails could be beneficial to helping PLWH reengage in care, and acceptable to PLWH if done in a way that is sensitive to the needs and reservations of incarcerated individuals. Further research should continue to explore the attitudes of PLWH and other key stakeholders toward implementing D2C in jails, as well as practical measures to support this intervention across varying jail settings.

Authors' Contributions

D.L.R. designed the overall study, oversaw data collection and management, and provided critical feedback on all drafts. M.H.B. oversaw data analysis and wrote the majority of the article. C.B. managed the study, contributed to data analysis, drafted portions of the article, and provided critical feedback on all drafts. S.B.-B. and M.E.B. collected data, contributed to data analysis, drafted portions of the article, and provided critical feedback on all drafts. All authors approved the final article for submission.

Disclaimer

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This work was supported by the National Institute of Allergy and Infectious Diseases of the National Institutes of Health under award number R01AI129731 and the University of North Carolina at Chapel Hill, Center for AIDS Research (CFAR), an NIH funded program P30 AI050410.

Supplementary Material

Supplementary Table S1