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

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

doi:10.2196/19891

Cited by 6 publications

(5 citation statements)

References 24 publications

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“…The improved HIV treatment outcomes observed among people living with HIV who received supportive services from Rainbow Family were likely a major contributing factor to the higher cumulative survival in the exposure group. Decades of research have shown that retention in care and ART adherence are essential to achieving and maintaining viral suppression, improving immune function, and thereby reducing ARM among people living with HIV [ 37 - 42 ]. Our results suggest that the observed reductions in all-cause mortality between the exposure and control groups were primarily driven by reductions in ARM as NARM did not significantly differ between the 2 groups.…”

Section: Discussionmentioning

confidence: 99%

Peer-Led Community-Based Support Services and HIV Treatment Outcomes Among People Living With HIV in Wuxi, China: Propensity Score–Matched Analysis of Surveillance Data From 2006 to 2021

Meng¹,

Yin²,

Ma³

et al. 2023

JMIR Public Health Surveill

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Background Community-based organizations deliver peer-led support services to people living with HIV. Systematic reviews have found that peer-led community-based support services can improve HIV treatment outcomes; however, few studies have been implemented to evaluate its impact on mortality using long-term follow-up data. Objective We aimed to evaluate the associations between the receipt of peer-led community-based support services and HIV treatment outcomes and survival among people living with HIV in Wuxi, China. Methods We performed a propensity score–matched retrospective cohort study using data collected from the Chinese National HIV/AIDS Comprehensive Information Management System for people living with HIV in Wuxi, China, between 2006 and 2021. People living with HIV who received adjunctive peer-led community-based support for at least 6 months from a local community-based organization (exposure group) were matched to people living with HIV who only received routine clinic-based HIV care (control group). We compared the differences in HIV treatment outcomes and survival between these 2 groups using Kaplan-Meier curves. We used competing risk and Cox proportional hazards models to assess correlates of AIDS-related mortality (ARM) and all-cause mortality. We reported adjusted subdistribution hazard ratio and adjusted hazard ratio with 95% CIs. Results A total of 860 people living with HIV were included (430 in the exposure group and 430 in the control group). The exposure group was more likely to adhere to antiretroviral therapy (ART; 396/430, 92.1% vs 360/430, 83.7%; P<.001), remain retained in care 12 months after ART initiation (402/430, 93.5% vs 327/430, 76.1%; P<.001), and achieve viral suppression 9 to 24 months after ART initiation (357/381, 93.7% vs 217/243, 89.3%; P=.048) than the control group. The exposure group had significantly lower ARM (1.8 vs 7.0 per 1000 person-years; P=.01) and all-cause mortality (2.3 vs 9.3 per 1000 person-years; P=.002) and significantly higher cumulative survival rates (P=.003). The exposure group had a 72% reduction in ARM (adjusted subdistribution hazard ratio 0.28, 95% CI 0.09-0.95) and a 70% reduction in all-cause mortality (adjusted hazard ratio 0.30, 95% CI 0.11-0.82). The nonrandomized retrospective nature of our analysis prevents us from determining whether peer-led community-based support caused the observed differences in HIV treatment outcomes and survival between the exposure and control groups. Conclusions The receipt of peer-led community-based support services correlated with significantly improved HIV treatment outcomes and survival among people living with HIV in a middle-income country in Asia. The 15-year follow-up period in this study allowed us to identify associations with survival not previously reported in the literature. Future interventional trials are needed to confirm these findings.

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Section: Discussionmentioning

confidence: 99%

Peer-Led Community-Based Support Services and HIV Treatment Outcomes Among People Living With HIV in Wuxi, China: Propensity Score–Matched Analysis of Surveillance Data From 2006 to 2021

Meng¹,

Yin²,

Ma³

et al. 2023

JMIR Public Health Surveill

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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: 99%

“…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%

“…Despite their professional and disciplinary diversity, expert participants universally acknowledged the public health needs that D2C programs aim to address, and most expressed support for the public health goals such programs fulfill. In discussing the practical and ethical considerations of implementing such programs, however, they also qualified their support with a range of significant concerns in 7 key domains: permission and consent, government assistance versus overreach, privacy and confidentiality, stigma, HIV exceptionalism, criminalization, and data integrity and sharing [11].…”

Section: Qualitative Stakeholder Interviewsmentioning

confidence: 99%

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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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“…A collaborative D2C model may be initiated by health departments with primary healthcare providers, or vice versa , by using HIV case surveillance data and other data sources [ 8 , 10 ]. The literature shows some success in implementing D2C and improving HIV care outcomes [ 11 , 12 , 13 , 14 , 15 ].…”

Section: Introductionmentioning

confidence: 99%

Costs and cost‐effectiveness of a collaborative data‐to‐care intervention for HIV treatment and care in the United States

et al. 2023

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Introduction Data‐to‐care programmes utilize surveillance data to identify persons who are out of HIV care, re‐engage them in care and improve HIV care outcomes. We assess the costs and cost‐effectiveness of re‐engagement in an HIV care intervention in the United States. Methods The Cooperative Re‐engagement Control Trial (CoRECT) employed a data‐to‐care collaborative model between health departments and HIV care providers, August 2016–July 2018. The health departments in Connecticut (CT), Massachusetts (MA) and Philadelphia (PHL) collaborated with HIV clinics to identify newly out‐of‐care patients and randomize them to receive usual linkage and engagement in care services (standard‐of‐care control arm) or health department‐initiated active re‐engagement services (intervention arm). We used a microcosting approach to identify the activities and resources involved in the CoRECT intervention, separate from the standard‐of‐care, and quantified the costs. The cost data were collected at the start‐up and recurrent phases of the trial to incorporate potential variation in the intervention costs. The costs were estimated from the healthcare provider perspective. Results The CoRECT trial in CT, MA and PHL randomly assigned on average 327, 316 and 305 participants per year either to the intervention arm (n = 166, 159 and 155) or the standard‐of‐care arm (n = 161, 157 and 150), respectively. Of those randomized, the number of participants re‐engaged in care within 90 days in the intervention and standard‐of‐care arms was 85 and 70 in CT, 84 and 70 in MA, and 98 and 67 in PHL. The additional number of participants re‐engaged in care in the intervention arm compared with those in the standard‐of‐care arm was 15 (CT), 14 (MA) and 31 (PHL). We estimated the annual total cost of the CoRECT intervention at $490,040 in CT, $473,297 in MA and $439,237 in PHL. The average cost per participant enrolled was $2952, $2977 and $2834 and the average cost per participant re‐engaged in care was $5765, $5634 and $4482. We estimated an incremental cost per participant re‐engaged in care at $32,669 (CT), $33,807 (MA) and $14,169 (PHL). Conclusions The costs of the CoRECT intervention that identified newly out‐of‐care patients and re‐engaged them in HIV care are comparable with other similar interventions, suggesting a potential for its cost‐effectiveness in the US context.

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

Cited by 6 publications

References 24 publications

Peer-Led Community-Based Support Services and HIV Treatment Outcomes Among People Living With HIV in Wuxi, China: Propensity Score–Matched Analysis of Surveillance Data From 2006 to 2021

Peer-Led Community-Based Support Services and HIV Treatment Outcomes Among People Living With HIV in Wuxi, China: Propensity Score–Matched Analysis of Surveillance Data From 2006 to 2021

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

Costs and cost‐effectiveness of a collaborative data‐to‐care intervention for HIV treatment and care in the United States

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