"Take care of their hierarchy of needs first": strategies used by data-to-care staff to address barriers to HIV care engagement.

Data-to-Care (D2C) is a public health strategy designed to engage out-of-care (OOC) persons with HIV (PWH) in HIV care. OOC PWH are identified through review of state and local HIV data and engaged in care through individualized efforts that address barriers to HIV care. Perspectives of D2C program staff can contribute to D2C program development and sustainability. We conducted semi-structured interviews in 2017 with 20 D2C program staff from Louisiana (n = 10) and Virginia (n = 10), states with distinct D2C programs. We used content and thematic analysis to analyze interview transcripts. In both states, common barriers to care for OOC PWH include limited transportation, stigma, substance use, poverty, homelessness, and mental illness. To address these barriers and engage OOC clients in HIV care, staff and programs provided transportation vouchers and housing assistance, integrated substance use and mental health services into care engagement processes, provided empathy and compassion, and assessed and addressed basic unmet needs. Identifying and addressing social and structural barriers to HIV care is a critical and often a necessary first step in engaging OOC clients in HIV care. These findings can be used for D2C program design and implementation, facilitating engagement in HIV care for OOC PWH.

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

Data-to-Care (D2C) uses surveillance data (e.g., laboratory, Medicaid billing) to identify out-of-care HIV-positive persons to re-link them to care. Most US states are implementing D2C, yet few studies have explored stakeholders' perspectives on D2C, and none have addressed these perspectives in the context of D2C in jail. This article reports findings from qualitative, semi-structured interviews conducted with expert stakeholders regarding their perspectives on the ethical challenges of utilizing D2C to understand and improve continuity of care among individuals incarcerated in jails. Participants included 47 professionals with expertise in ethics and privacy, public health and HIV care, the criminal justice system, and community advocacy. While participants expressed a great deal of support for extending D2C to jails, they also identified many possible risks. Stakeholders discussed many issues specific to D2C in jails, such as heightened stigma in the jail setting, the need for training of jail staff and additional non-medical community-based resources, and the high priority of this vulnerable population. Many experts suggested that the actual likelihood of benefits and harms would depend on contextual details. Implementation of D2C in jails may require novel strategies to minimize risk of disclosing out-of-care patients' HIV status.

Predictors of Successful HIV Care Re-engagement Among Persons Poorly Engaged in HIV Care.

The Data to Care (D2C) strategy uses HIV surveillance data to identify persons living with HIV (PLWH) who are poorly engaged in care and offers assistance with care re-engagement. We evaluated HIV care re-engagement among PLWH in Seattle & King County, Washington after participation in a D2C program and determined whether variables available at the time of the D2C interview predicted subsequent re-engagement in care. We defined successful re-engagement as surveillance evidence of either continuous care engagement (≥ 2 CD4 counts or HIV RNA results ≥ 60 days apart) or viral suppression (≥ 1 HIV RNA < 200 copies/mL) in the year following the D2C interview. Predictor variables included client characteristics, beliefs about HIV care, and scores on psychosocial assessment scales. Half of participants successfully re-engaged in care. We did not find any significant predictors of re-engagement except viral suppression at the time of the D2C interview. Close follow-up is needed to identify which D2C participants need additional assistance re-engaging in care.

Health department-HIV clinic integration of data and human resources to re-engage out of care HIV-positive persons into clinical care in a New York City locale.

We describe an enhanced data to care (eD2C) initiative combining New York City (NYC) Department of Health and Mental Hygiene (DOHMH) HIV surveillance data and a collaborating HIV clinic records to identify and re-engage into care persons living with HIV (PLWH), and presumed to be out of care (OOC). DOHMH identified presumed-OOC persons who lacked recent HIV-related laboratory test reports (e.g., viral load, CD4) in the NYC surveillance registry, and whose last laboratory reports were from the collaborating clinic. The clinic then obtained the current care status of the presumed-OOC persons per their medical record system. The final list of persons deemed to be OOC by DOHMH and clinic were given to a clinic patient navigator and DOHMH disease intervention specialist (DIS) for re-engagement in care efforts. The initiative was a pilot effort aimed at reducing the inefficiencies (e.g., persons current with care, but deemed to be OOC) inherent in routine data to care (rD2C), using surveillance data or clinic medical records alone. Significantly, fewer PLWH, presumed to be OOC in eD2C than DOHMH rD2C were found to be current with care (2% vs. 16%, P = <.001). After adjusting for significant characteristics, time since OOC and years since HIV diagnosis, the odds of re-engaging in HIV care were significantly higher among eD2C (aOR: 2172.31; 95% CI: 1171.23-4044.36) than the rD2C group. We demonstrated the feasibility of leveraging DOHMH and HIV clinic data and human resources to potentially gain efficiencies in efforts to re-engage and retain PLWH in HIV care.

Implementing data-to-care initiatives for HIV in New York state: assessing the value of community health centers identifying persons out of care for health department follow-up.

To end the HIV/AIDS epidemic, innovative strategies are needed to improve outcomes along the HIV care continuum. Data-to-Care is a public health strategy whereby HIV surveillance data are used to identify people living with HIV/AIDS for linkage to, or re-engagement in HIV medical care. Three main approaches to Data-to-Care are defined by where persons out of care are identified and where outreach activities are initiated: the Health Department level, the Healthcare Provider level, or a combination of the two (Combination Model). The purpose of this evaluation was to compare successes and challenges for two Data-to-Care models implemented in New York State between 1 January 2015 and 1 September 2016: a Health Department Model, and a Combination Model. The Health Department Model identifies persons presumed to be out of care based on an absence of HIV laboratory tests within the states surveillance system alone, and the Combination Model identifies individuals based on both an absence of a medical provider visit at a partnering health center, and an absence of HIV laboratory tests in the surveillance system. Only counties served by partnering health centers were included in this evaluation. In the Health Department Model, 348 out of 1352 (26%) surveillance identified individuals were truly out of care; of those, re-linkage success was 78%. In the Combination Model, 19 out of 51 (37%) individuals were truly out of care; of those, re-linkage success was 63%. The proportion of cases truly out of care was significantly higher for the Combination Model than the Health Department Model (p-value: 0.08). Both models were successful in re-linking a high proportion of individuals back to care, though the efficiency of identifying individuals who are truly out of care remains an area in need of further refinement for both models.

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

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.

Expanding PrEP Services for Men Who Have Sex With Men and Transgender Persons Through Health Department Programs: Key Processes and Outcomes From Project PrIDE, 2015-2019.

OBJECTIVE: Pre-exposure prophylaxis (PrEP) Implementation, Data to Care, and Evaluation (PrIDE) was a demonstration project implemented by 12 state and local health departments during 2015-2019 to expand PrEP services for men who have sex with men (MSM) and transgender persons at risk for HIV infection. We describe findings from the cross-jurisdictional evaluation of the project. METHODS: We analyzed work plans, annual progress reports, and aggregate quantitative program data submitted by funded health departments (n = 12) to identify key activities implemented and summarize key project outcomes. RESULTS: PrIDE jurisdictions implemented multiple health equity-focused activities to expand PrEP services to priority populations, including building program capacity, conducting knowledge and awareness campaigns, providing PrEP support services, and addressing barriers to PrEP use. Overall, PrIDE jurisdictions identified 44 813 persons with PrEP indications. Of these, 74.8% (n = 33 500) were referred and 33.1% (n = 14 821) were linked to PrEP providers, and 25.3% (n = 11 356) were prescribed PrEP. Most persons prescribed PrEP were MSM or transgender persons (87.9%) and persons from racial and ethnic minority groups (65.6%). However, among persons with PrEP indications, non-Hispanic Black/African American persons (14.9% of 18 782) were less likely than non-Hispanic White persons (31.0% of 11 633) to be prescribed PrEP (z = -33.57; P < .001). CONCLUSIONS: PrIDE jurisdictions successfully expanded PrEP services for MSM, transgender persons, and racial and ethnic minority groups by implementing health equity-focused activities that addressed barriers to PrEP services. However, PrEP prescription was generally low, with significant disparities by demographic characteristics. Additional targeted interventions are needed to expand PrEP services, achieve equity in PrEP use, and contribute to ending the HIV epidemic in the United States.

Expanding Data to Care Programs to Improve HIV Care Continuum Among Men Who Have Sex With Men and Transgender Persons: Key Processes and Outcomes From Project PrIDE, 2015-2019.

OBJECTIVES: During 2015-2019, five local and state health department jurisdictions implemented Data to Care (D2C) programs supported by Project PrIDE (Pre-exposure prophylaxis, Implementation, Data to Care, and Evaluation) to improve linkage or reengagement in HIV medical care among persons with HIV (PWH) who had gaps in care, particularly among men who have sex with men (MSM) and transgender persons. We describe findings from the cross-jurisdiction evaluation of the project. METHODS: We conducted a qualitative analysis of the final progress reports submitted by PrIDE jurisdictions to the Centers for Disease Control and Prevention to identify key D2C activities implemented and challenges encountered. We also conducted descriptive analysis on aggregate quantitative data to summarize key D2C program outcomes. RESULTS: PrIDE jurisdictions implemented multiple activities to build their D2C capacity, identify PWH who were not in care or virally suppressed, provide linkage/reengagement services, and monitor outcomes. Overall, 11 463 PWH were selected for follow-up, 45% of whom were MSM or transgender persons. Investigations were completed for 8935 (77.9%) PWH. Only 2323 (26.0%) PWH were confirmed not in care or virally suppressed; 1194 (51.4%) were subsequently linked/reengaged in care; among those, 679 (56.9%) were virally suppressed at last test. PrIDE jurisdictions identified data-related (eg, incomplete or delayed laboratory results), program capacity (eg, insufficient staff), and social and structural (eg, unstable housing) challenges that affected their D2C implementation. CONCLUSIONS: PrIDE jurisdictions successfully enhanced their D2C capacity, reached priority populations who were not in care or virally suppressed, and improved their engagement in care and health outcomes. Data-related and non-data-related challenges limited the efficiency of D2C programs. Findings can help inform other D2C programs and contribute to national HIV prevention goals.

The Cooperative Re-Engagement Controlled trial (CoRECT): A randomised trial to assess a collaborative data to care model to improve HIV care continuum outcomes.

Background: Persons with HIV (PWH), aware of their HIV infection but not in care account for an estimated 42.6% of HIV transmissions in the United States. Health departments and clinics implemented a collaborative data-to-care strategy to identify persons newly out-of-care with the objective of increasing re-engagement, retention in medical care, and viral load suppression. Methods: A multi-site, prospective randomised trial was conducted to identify newly out-of-care PWH using surveillance and clinic data in Connecticut (CT), Massachusetts (MA) and Philadelphia (PHL). All out-of-care participants were randomised to receive standard of care or an active public health intervention. Re-engagement in care was defined as having a documented CD4 count and/or HIV viral load within 90 days of randomization. Retention was defined as having at least two CD4 count and/or HIV viral load results ≥ 3 months apart within 12 months of randomization, and viral load suppression as having a viral load < 200 copies/ml within 12 months of randomization. Findings: Between August 2016 and July 2018, 1893 out-of-care participants were randomised from CT (N = 654), MA (N = 630), and PHL (N = 609). Participants were male (69.5%), non-Hispanic Black (48.3%) and men who have sex with men (38.8%). Re-engagement within 90 days was significantly higher for the intervention group overall and in all three jurisdictions (All sites: 54.9% vs 42.1%, p < 0.0001; CT: 51.2% vs 41.9%, p = 0.02; MA: 52.7% vs 44.1%, p = 0.03; PHL 61.2% vs 40.3%, p < 0.0001). Retention in care over 12 months improved overall (p = 0.04). Median time to viral suppression was reduced overall (p = 0.0006); CT (p = 0.32), MA (p = 0.02) and PHL (p < 0.0001). Interpretation: This trial showed that a collaborative, data-to-care strategy, and active public health intervention led by health departments significantly increases the proportion of PWH re-engaged in HIV care and may improve retention in care and decrease time to viral suppression.

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

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.

"Is a Bird in the Hand Worth 5 in the Bush?": A Comparison of 3 Data-to-Care Referral Strategies on HIV Care Continuum Outcomes in San Francisco.

BACKGROUND: Health departments utilize HIV surveillance data to identify people with HIV (PWH) who need re-linkage to HIV care as part of an approach known as Data to Care (D2C.) The most accurate, effective, and efficient method of identifying PWH for re-linkage is unknown. METHODS: We evaluated referral and care continuum outcomes among PWH identified using 3 D2C referral strategies: health care providers, surveillance, and a combination list derived by matching an electronic medical record registry to HIV surveillance. PWH who were enrolled in the re-linkage intervention received short-term case management for up to 90 days. Relative risks and 95% confidence intervals were calculated to compare proportions of PWH retained and virally suppressed before and after re-linkage. Durable viral suppression was defined as having suppressed viral loads at all viral load measurements in the 12 months after re-linkage. RESULTS: After initial investigation, 233 (24%) of 954 referrals were located and enrolled in navigation. Although the numbers of surveillance and provider referrals were similar, 72% of enrolled PWH were identified by providers, 16% by surveillance, and 12% by combination list. Overall, retention and viral suppression improved, although relative increases in retention and viral suppression were only significant among individuals identified by surveillance or providers. Seventy percent of PWH who achieved viral suppression after the intervention remained durably virally suppressed. CONCLUSIONS: PWH referred by providers were more likely to be located and enrolled in navigation than PWH identified by surveillance or combination lists. Overall, D2C re-linkage efforts improved retention, viral suppression, and durable viral suppression.

Application of a Multisite Empowerment Evaluation Approach to Increase Evaluation Capacity Among HIV Services Providers: Results From Project Pride in Chicago.

In 2015, the Centers for Disease Control and Prevention (CDC) funded Project PrIDE, a national initiative to implement and evaluate demonstration projects to increase PrEP uptake among HIV-negative individuals and to re-engage HIV-positive individuals in HIV care. Our team served as the Evaluation Center for Project PrIDE organizations in Chicago and used an empowerment evaluation (EE) approach to enhance evaluation capacity at these organizations. To evaluate our approach, we assessed organizations' evaluation capacity and engagement in technical assistance and capacity building activities in 2016 and 2018. Respondents who self-reported higher engagement with the Evaluation Center and who spent a greater number of hours engaged with our evaluators experienced greater increases in evaluation capacity tied to implementation of evaluation activities and technical assistance utilization. These findings demonstrate that multisite EE can be successfully applied to increase the evaluation capacity of organizations providing both HIV prevention and care services.

Locating People Diagnosed With HIV for Public Health Action: Utility of HIV Case Surveillance and Other Data Sources.

INTRODUCTION: Human immunodeficiency virus (HIV) case surveillance and other health care databases are increasingly being used for public health action, which has the potential to optimize the health outcomes of people living with HIV (PLWH). However, often PLWH cannot be located based on the contact information available in these data sources. We assessed the accuracy of contact information for PLWH in HIV case surveillance and additional data sources and whether time since diagnosis was associated with accurate contact information in HIV case surveillance and successful contact. MATERIALS AND METHODS: The Case Surveillance-Based Sampling (CSBS) project was a pilot HIV surveillance system that selected a random population-based sample of people diagnosed with HIV from HIV case surveillance registries in 5 state and metropolitan areas. From November 2012 through June 2014, CSBS staff members attempted to locate and interview 1800 sampled people and used 22 data sources to search for contact information. RESULTS: Among 1063 contacted PLWH, HIV case surveillance data provided accurate telephone number, address, or HIV care facility information for 239 (22%), 412 (39%), and 827 (78%) sampled people, respectively. CSBS staff members used additional data sources, such as support services and commercial people-search databases, to locate and contact PLWH with insufficient contact information in HIV case surveillance. PLWH diagnosed <1 year ago were more likely to have accurate contact information in HIV case surveillance than were PLWH diagnosed ≥1 year ago ( P = .002), and the benefit from using additional data sources was greater for PLWH with more longstanding HIV infection ( P < .001). PRACTICE IMPLICATIONS: When HIV case surveillance cannot provide accurate contact information, health departments can prioritize searching additional data sources, especially for people with more longstanding HIV infection.

Implementing a Data to Care Strategy to Improve Health Outcomes for People With HIV: A Report From the Care and Prevention in the United States Demonstration Project.

OBJECTIVES: The Care and Prevention in the United States Demonstration Project included implementation of a Data to Care strategy using surveillance and other data to (1) identify people with HIV infection in need of HIV medical care or other services and (2) facilitate linkages to those services to improve health outcomes. We present the experiences of 4 state health departments: Illinois, Louisiana, Tennessee, and Virginia. METHODS: The 4 state health departments used multiple databases to generate listings of people with diagnosed HIV infection (PWH) who were presumed not to be in HIV medical care or who had difficulty maintaining viral suppression from October 1, 2013, through September 29, 2016. Each health department prioritized the listings (eg, by length of time not in care, by viral load), reviewed them for accuracy, and then disseminated the listings to staff members to link PWH to HIV care and services. RESULTS: Of 16 391 PWH presumed not to be in HIV medical care, 9852 (60.1%) were selected for follow-up; of those, 4164 (42.3%) were contacted, and of those, 1479 (35.5%) were confirmed to be not in care. Of 794 (53.7%) PWH who accepted services, 694 (87.4%) were linked to HIV medical care. The Louisiana Department of Health also identified 1559 PWH as not virally suppressed, 764 (49.0%) of whom were eligible for follow-up. Of the 764 PWH who were eligible for follow-up, 434 (56.8%) were contacted, of whom 269 (62.0%) had treatment adherence issues. Of 153 PWH who received treatment adherence services, 104 (68.0%) showed substantial improvement in viral suppression. CONCLUSIONS: The 4 health departments established procedures for using surveillance and other data to improve linkage to HIV medical care and health outcomes for PWH. To be effective, health departments had to enhance coordination among surveillance, care programs, and providers; develop mechanisms to share data; and address limitations in data systems and data quality.