Expert stakeholders’ perspectives on a Data-to-Care strategy for improving care among HIV-positive individuals incarcerated in jails

Buchbinder, Mara; Blue, Colleen; Juengst, Eric T.; Brinkley‐Rubinstein, Lauren; Rennie, Stuart; Rosen, David L.

doi:10.1080/09540121.2020.1737641

Cited by 7 publications

(6 citation statements)

References 18 publications

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“…Expansion of community D2C services has the potential to preempt or at least alleviate jails’ roles as de facto HIV safety net providers. Additionally, our previous research suggests that PLWH and other stakeholders (e.g., HIV providers, privacy experts, community advocates) generally support extending D2C services to jails to help ensure that PLWH who do become incarcerated have access to HIV services during incarceration and after release [ 28 ].…”

Section: Discussionmentioning

confidence: 99%

Access to HIV care in jails: Perspectives from people living with HIV in North Carolina

et al. 2022

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Most incarcerations for people living with HIV (PLWH) occur in jails, yet studies of HIV care during jail incarceration are limited. As part of a larger study to explore the ethical considerations in extending public health HIV surveillance to jail settings, we conducted semi-structured interviews with twenty-three PLWH with more than 300 distinct jail incarcerations post HIV diagnosis in 21 unique North Carolina jails. Interviews included questions about HIV disclosure in jail, the type of HIV care received in jail, and overall experiences with HIV care in jail. We report on participants’ experiences and perspectives in four domains: access to HIV care in jail; impact of jail incarceration on continuity of HIV care; privacy and stigma; and satisfaction with HIV care in jail. Although most participants received HIV medications and saw providers while in jail, almost half reported that their greatest challenge in regard to HIV care was obtaining their HIV medications in the face of limited jail resources or policies that made access to medications difficult. Findings from this study suggest that jail leadership should review internal policies regarding HIV medications to ensure that PLWH can receive them quickly upon entry into jail. Findings also suggest that more external resources are needed, for example from state and local health departments, so that jails can provide timely HIV medications for PLWH incarcerated in their facilities.

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Section: Discussionmentioning

confidence: 99%

Access to HIV care in jails: Perspectives from people living with HIV in North Carolina

et al. 2022

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“…Below we describe our methods for recruitment, data collection, and analysis. A full description of the parent study, data collection, and analysis are provided elsewhere [ 19 ].…”

Section: Methodsmentioning

confidence: 99%

“…We used Dedoose software to analyze interview transcripts across twenty-two thematic codes. After coding was completed using a set of procedures reported elsewhere [ 19 ], we identified salient themes for further analysis and further examined coding reports from each coding category to identify patterns across the larger dataset. For this article, we focused on stakeholders’ responses in seven thematic domains relevant to practical and ethical concerns in implementing D2C: permission and consent, government assistance vs overreach, privacy and confidentiality, HIV stigma, HIV exceptionalism, HIV criminalization, and data integrity and sharing.…”

Section: Methodsmentioning

confidence: 99%

Practical and Ethical Concerns in Implementing Enhanced Surveillance Methods to Improve Continuity of HIV Care: Qualitative Expert Stakeholder Study

Buchbinder

Blue

Rennie

et al. 2020

JMIR Public Health Surveill

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Background Retention in HIV care is critical to maintaining viral suppression and preventing further transmission, yet less than 50% of people living with HIV in the United States are engaged in care. All US states have a funding mandate to implement Data-to-Care (D2C) programs, which use surveillance data (eg, laboratory, Medicaid billing) to identify out-of-care HIV-positive persons and relink them to treatment. Objective The purpose of this qualitative study was to identify and describe practical and ethical considerations that arise in planning for and implementing D2C. Methods Via purposive sampling, we recruited 43 expert stakeholders—including ethicists, privacy experts, researchers, public health personnel, HIV medical providers, legal experts, and community advocates—to participate in audio-recorded semistructured interviews to share their perspectives on D2C. Interview transcripts were analyzed across a priori and inductively derived thematic categories. Results Stakeholders reported practical and ethical concerns in seven key domains: permission and consent, government assistance versus overreach, privacy and confidentiality, stigma, HIV exceptionalism, criminalization, and data integrity and sharing. Conclusions Participants expressed a great deal of support for D2C, yet also stressed the role of public trust and transparency in addressing the practical and ethical concerns they identified.

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“…The results of our qualitative interviews have been reported and discussed elsewhere [10][11][12], but we briefly summarize here. Expert stakeholder interviewees included 30 participants from North Carolina; the remainder lived in other US states (n = 15) or outside the United States (n = 2).…”

Section: Qualitative Stakeholder Interviewsmentioning

confidence: 98%

“…The workshop design was informed by a set of qualitative interviews conducted in 2018-2019 with 47 expert stakeholders and 18 recently incarcerated PLWH. These qualitative interviews examined the public health benefits, ethical challenges, and practical opportunities in using publicly available jail records, court records, and state health department HIV registry records to improve the continuity of care for PLWH experiencing incarceration [10][11][12]. In this report, we review this background interview study and the discussion of its results by the stakeholders from the field who participated in the 2020 workshop.…”

Section: Original Researchmentioning

confidence: 99%

Improving the Continuity of Care for People Living with HIV Experiencing Incarceration in North Carolina Jails: Stakeholder Perspectives

Juengst¹,

Buchbinder²,

Blue³

et al. 2022

North Carolina Medical Journal

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background Jail detention can disrupt the continuity of care for people living with HIV/AIDS (PLWH). Using a state's "Data to Care" (D2C) program might help overcome this barrier, but raises important questions of data security, personal privacy, resource allocation, and logistics. methods As part of a study involving in-depth expert stakeholder interviews, a 1-day workshop was convened to identify and discuss potential ethical challenges in extending North Carolina's D2C program to jail settings. Workshop participants included public health officials, community advocates, HIV clinicians, jail administrators, privacy experts, criminal justice researchers, and a formerly incarcerated PLWH. Workshop participants discussed the results of earlier stakeholder interviews with the goal of identifying the most important points to consider in assessing the merits of extending D2C surveillance to jail settings. results Although the workshop participants expressed support for improving the continuity of HIV care for jail detainees, they had mixed perspectives on whether a jail-based D2C program should include in-jail or post-release follow-up interventions. Their positions were influenced by their views on 4 sets of implementation issues: privacy/data-sharing; government assistance/overreach; HIV criminalization/ exceptionalism; and community engagement. limitations The limitations of this stakeholder engagement exercise include its purposive recruitment, relatively small number of participants, and limited duration. conclusions Improving the continuity of HIV care in particular jail settings will depend on a number of local considerations. In deciding between models featuring in-jail and post-release follow-up care, the most important of these considerations will be the possibility of establishing good partnerships between the jail, the health department, and the community. Additional research on the dynamics and impact of different models is needed.

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Expert stakeholders’ perspectives on a Data-to-Care strategy for improving care among HIV-positive individuals incarcerated in jails

Cited by 7 publications

References 18 publications

Access to HIV care in jails: Perspectives from people living with HIV in North Carolina

Access to HIV care in jails: Perspectives from people living with HIV in North Carolina

Practical and Ethical Concerns in Implementing Enhanced Surveillance Methods to Improve Continuity of HIV Care: Qualitative Expert Stakeholder Study

Improving the Continuity of Care for People Living with HIV Experiencing Incarceration in North Carolina Jails: Stakeholder Perspectives

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