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

Abstract

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.

Keywords: Care and Prevention in the United States Demonstration Project; Data to Care; HIV; HIV surveillance; Secretary’s Minority AIDS Initiative Fund.

Figure 1.

Data to Care (D2C) process and overall outcomes among people with diagnosed HIV infection and not in HIV medical care, Care and Prevention in the United States (CAPUS) Demonstration Project, Illinois, Louisiana, Tennessee, and Virginia state health departments, 2013-2016. D2C is a high-impact public health strategy that uses HIV surveillance and other data to identify people with diagnosed HIV infection who are in need of HIV medical care and other services and link them to those services. The CAPUS Demonstration Project was a 4-year cross-agency demonstration project funded by the US Department of Health and Human Services Secretary’s Minority AIDS Initiative Fund through the Centers for Disease Control and Prevention. The time period covered was October 1, 2013, through September 29, 2016, for state health departments in Illinois, Louisiana, and Tennessee, and January 1, 2015, through September 29, 2016, for the Virginia Health Department.

Figure 2.

Steps and outcomes of the Data to Care (D2C) process among people with diagnosed HIV infection (PWH) who had virologic failure, Care and Prevention in the United States (CAPUS) Demonstration Project, Louisiana Department of Health, 2012-2016. D2C is a high-impact public health strategy that uses HIV surveillance and other data to identify PWH who are in need of HIV medical care and other services and link them to those services. The CAPUS Demonstration Project was a 4-year cross-agency demonstration project funded by the US Department of Health and Human Services Secretary’s Minority AIDS Initiative Fund through the Centers for Disease Control and Prevention (CDC). Virologic failure was defined as 2 consecutive viral load test results >1000 copies/mL at least 90-365 days apart in the past year with no clinically significant decrease between results (defined as a 3-fold decrease in viral load) or a viral load >500 000 copies/mL with no subsequent test within 3 months. PWH with an undetectable viral load within the past year and a subsequent viral load (taken at least 90 days later) that was >1000 copies/mL were excluded. This criterion was in place from October 1, 2013, through July 7, 2014, to exclude PWH who had minor changes in their viral load or other treatment-related issues unrelated to adherence. This D2C activity was implemented between October 1, 2013, and September 29, 2016, by the Louisiana Department of Health. A substantially improved viral load was defined as a 3-fold decrease in viral load. Data source: Panel on Antiretroviral Guidelines for Adults and Adolescents.