Data to Care

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Data to Care (D2C) is a public health strategy that uses HIV surveillance data, pharmacy fill data, clinic appointment data, and other treatment and care data sources to identify persons with HIV who are not in care, link those not in care to appropriate medical and social services, and ultimately support the HIV Care Continuum.

Data to Care, Improving health and prevention

About Data to Care

D2C approaches may vary and range in scope and design. Some examples of D2C activities include using HIV surveillance data routinely collected by state and local health departments and other data sources to:

  • identify persons who are not in care (NIC) and then link or re-engage them in care;
  • identify persons who are in care but not virally suppressed and work with these clients and their providers to achieve viral suppression; and
  • identify pregnant women or mothers and their exposed infants who may need coordinated services (perinatal HIV services coordination).

Considerations for Implementing D2C

D2C should be implemented as part of a comprehensive strategy for linkage to and re-engagement in care activities. It is a collaborative effort between the health department, HIV medical providers, and essential support service providers.

When implemented as part of a comprehensive strategy, D2C programs can result in:

  • successful linkage to or re-engagement in care for persons with HIV;
  • expanded partner services for persons with HIV not newly diagnosed, including an opportunity to re-interview individuals out of care, conduct partner notification, and offer testing and other prevention services;
  • identification of and follow-up with persons with HIV who may be in care, but are not virally suppressed, and need adherence support or other services;
  • improved surveillance data quality; and
  • better collaboration among surveillance, prevention, care, and treatment staff.

Data to Care Training

There is no CDC-supported training currently available for Data to Care. Technical assistance for the implementation of Data to Care is available.

To request technical assistance:

  1. CDC’s directly funded health department and CBO partners may request technical assistance by submitting a request in the CBA Tracking System.
  2. Organizations not directly funded by CDC may contact their local health department for assistance in submitting a request.

If you have questions or need additional assistance, please contact HIVCBA@cdc.gov.

Implementation and Marketing Materials

The National Alliance for State and Territorial AIDS Directors (NASTAD), a capacity building assistance (CBA) provider funded by the Centers for Disease Control and Prevention (CDC), offers two resources on D2C implementation for health departments:

The additional materials and resources listed below support the implementation and/or marketing of Data to Care by health departments, community-based organizations, and other healthcare organizations. The resources are evidence-based and designed for cost-effective, scalable implementation.

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The following are published articles on the various elements of D2C that health departments may find useful when implementing and improving their D2C programs.

Overview

  • Mokotoff ED, Green Ruth K, Benbow N, Sweeney P, Nelson Sapiano T, McNaghten AD. Data to Care: Lessons Learned From Delivering Technical Assistance to 20 Health Departments. J Acquir Immune Defic Syndr 2019;82(suppl 1):S74-79.
  • Sweeney P, DiNenno EA, Flores SA, Dooley S, Shouse RL, Muckleroy S, Margolis AD. HIV Data to Care—Using Public Health Data to Improve HIV Care and Prevention. J Acquir Immune Defic Syndr 2019;82(suppl 1):S1-S5.
  • Williams KM, Taylor RD, Painter T, Jeffries WL 4th, Prather C, Spikes P, Mulatu MS, Henny K, Hoyte T, Flores SA. Learning by Doing: Lessons From the Care and Prevention in the United States Demonstration Project. Public Health Rep 2018;133(2_suppl):18S-27S.

Implementation

  • Lewis S, Morrison M, Randall LM, Roosevelt K. The Partnerships for Care Project in Massachusetts: Developing Partnerships and Data Systems to Increase Linkage and Engagement in Care for Individuals Living With HIV. J Acquir Immune Defic Syndr 2019;82(suppl 1):S47-S52.
  • Neblett Fanfair R, Shrestha RK, Randall L, Lucas C, Nichols L, Camp NM, Brady K, Jenkins H, Altice F, Villanueva M, DeMaria A. Implementing Data to Care—What Are the Costs for the Health Department? J Acquir Immune Defic Syndr 2019;82 (suppl 1):S57-S61.

Demonstration Projects

  • Beltrami J, Dubose O, Carson R, Cleveland JC. Using HIV Surveillance Data to Link People to HIV Medical Care, 5 U.S. States, 2012-2015. Public Health Rep 2018;133(4):385-391.
  • Bove JM, Golden MR, Dhanireddy S, Harrington RD, Dombrowski JC. Outcomes of a Clinic-Based Surveillance-Informed Intervention to Relink Patients to HIV Care. J Acquir Immune Defic Syndr 2015;70(3):262-268.
  • Buchacz K, Chen MJ, Parisi MK, Yoshida-Cervantes M, Antunez E, Delgado V, Moss NJ, Scheer S. Using HIV surveillance registry data to re-link persons to care: The RSVP Project in San Francisco. PLoS One 2015;10(3):e0118923.
  • Dombrowski JC, Bove J, Roscoe JC, Harvill J, Firth CL, Khormooji S, Carr J, Choi P, Smith C, Schafer SD, Golden MR; Northwest Health Department Centers for AIDS Research (CFAR) Consortium. “Out of Care” HIV Case Investigations: A Collaborative Analysis Across 6 States in the Northwest U.S. J Acquir Immune Defic Syndr 2017;74(suppl 2):S81-S87.
  • Hague JC, John B, Goldman L, Nagavedu K, Lewis S, Hawrusik R, Rajabiun S, Cocoros N, Fukuda HD, Cranston K. Using HIV Surveillance Laboratory Data to Identify Out-of-Care Patients. AIDS Behav 2019;23(suppl 1):78-82.
  • Hart-Malloy R, Brown S, Bogucki K, Tesoriero J. 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. AIDS Care 2018;30(3):391-396.
  • Sweeney P, Hoyte T, Mulatu MS, Bickham J, Brantley AD, Hicks C, McGoy SL, Morrison M, Rhodes A, Yerkes L, Burgess S, Fridge J, Wendell D. 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. Public Health Rep 2018;133(2_suppl):60S-74S.
  • Wohl AR, Dierst-Davies R, Victoroff A, James S, Bendetson J, Bailey J, Daar E, Spencer L, Kulkarni S, Pérez MJ. Implementation and Operational Research: The Navigation Program: An Intervention to Reengage Lost Patients at 7 HIV Clinics in Los Angeles County, 2012-2014. J Acquir Immune Defic Syndr 2016;71(2):e44-50.

Collaborations

  • Davies C, Klein PW, Okoye ID, Heitgerd J, Shapatava E, Ihiasota I, Browne MNC, Viall A, Stockmann D, Hauck H. Short-Term Outcomes and Lessons Learned From the Federal HIV Health Improvement Affinity Group for State Medicaid/Children’s Health Insurance Program Agencies and State Health Departments. J Acquir Immune Defic Syndr 2019;82(suppl 1):S62-S68.
  • Harrison TP, Williams KM, Mulatu MS, Edwards A, Somerville GG, Cobb-Souza S, Dunbar E, Barskey A. Integrating Federal Collaboration in HIV Programming: The CAPUS Demonstration Project, 2012-2016. Public Health Rep 2018;133(2_suppl):10s-17s.
  • Hart-Malloy R, Rajulu DT, Johnson MC, Shrestha T, Spencer EC, Anderson BJ, Tesoriero JM. Cross-Jurisdictional Data to Care: Lessons Learned in New York State and Florida. J Acquir Immune Defic Syndr 2019;82:S42-S46.
  • Macomber KE, Viall A, Ramakrishnan V, Wilson J, Brandt MG, Kinsinger L, Kreiner M, Curtis T, Copeland R, Staudacher A, Neff D. Operationalizing a Data to Care Strategy in Michigan Through Cross-Agency Collaborations. J Acquir Immune Defic Syndr 2019;82:S69-S73.
  • Ocampo JMF, Smart JC, Allston A, Bhattacharjee R, Boggavarapu S, Carter S, Castel AD, Collmann J, Flynn C, Hamp A, Jordan D, Kassaye S, Kharfen M, Lum G, Pemmaraju R, Rhodes A, Stover J, Young MA. Improving HIV Surveillance Data for Public Health Action in Washington, DC: A Novel Multiorganizational Data-Sharing Method. JMIR Public Health Surveill 2016;2(1):e3.

Community Engagement

  • Evans D, Van Gorder D, Morin SF, Steward WT, Gaffney S, Charlebois ED. Acceptance of the use of HIV surveillance data for care engagement: National and local community perspectives. J Acquir Immune Defic Syndr 2015;69 (suppl 1):S31-S36.

Data Sources

  • Arey AL, Cassidy-Stewart H, Kurowski PL, Hitt JC, Flynn CP. Evaluating HIV Surveillance Completeness Along the Continuum of Care: Supplementing Surveillance With Health Center Data to Increase HIV Data to Care Efficiency. J Acquir Immune Defic Syndr 2019;82:S26-S32.
  • Beer L, Bosh KA, Chowdhury PP, Craw J, Nyaku MA, Luna-Gierke RE, Sanders CC, Shouse RL. Informing Data to Care: Contacting Persons Sampled for the Medical Monitoring Project. J Acquir Immune Defic Syndr 2019;82:S6-S12.
  • Byrd KK, Camp NM, Iqbal K, Weidle PJ. Pharmacy Data as an Alternative Data Source for Implementation of a Data to Care Strategy. J Acquir Immune Defic Syndr 2019;82:S53-S56.
  • Christopoulos KA, Scheer S, Steward WT, Barnes R, Hartogensis W, Charlebois ED, Morin SF, Truong HM, Geng EH. Examining clinic-based and public health approaches to ascertainment of HIV care status. J Acquir Immune Defic Syndr 2015;69 (suppl 1):S56-S62.
  • Enns EA, Reilly CS, Virnig BA, Baker K, Vogenthaler N, Henry K., Potential Impact of Integrating HIV Surveillance and Clinic Data on Retention-in-Care Estimates and Re-Engagement Efforts. AIDS Patient Care STDS 2016;30(9):409-415.
  • Kunzweiler C, Kishore N, John B, Roosevelt K, Lewis S, Klevens RM, Morrison M, Randall LM, DeMaria A Jr. Using HIV Surveillance and Clinic Data to Optimize Data to Care Efforts in Community Health Centers in Massachusetts: The Massachusetts Partnerships for Care Project. J Acquir Immune Defic Syndr 2019;82:S33-S41.
  • Lubelchek RJ, Finnegan KJ, Hotton AL, Hazen R, Murphy P, Prachand NG, Benbow N. Assessing the use of HIV surveillance data to help gauge patient retention-in-care. J Acquir Immune Defic Syndr 2015;69 (suppl 1):S25-S30.
  • Padilla M, Mattson CL, Scheer S, Udeagu CN, Buskin SE, Hughes AJ, Jaenicke T, Wohl AR, Prejean J, Wei SC. Locating People Diagnosed With HIV for Public Health Action: Utility of HIV Case Surveillance and Other Data Sources. Public Health Rep 2018;133(2):147-154.

Data Quality

  • Dombrowski JC, Bove J, Roscoe JC, Harvill J, Firth CL, Khormooji S, Carr J, Choi P, Smith C, Schafer SD, Golden MR; Northwest Health DepartmentCenters for AIDS Research (CFAR) Consortium. “Out of Care” HIV Case Investigations: A Collaborative Analysis Across 6 States in the Northwest U.S. J Acquir Immune Defic Syndr 2017;74(suppl 2):S81-S87.
  • Ocampo JMF, Hamp A, Rhodes A, Smart JC, Pemmaraju R, Poschman K, Hess KL, Bhattacharjee R, Flynn C, Anderson BJ, Dowling JE, Maccormack F, Doshi R, Lum G, Maddox L, Moncur B, Barnhart JE, Maxwell J, Aurand SB, Hogan V, Wills D, Prowell S, Kassaye SG, Karn HE, Laffoon BT, Collmann J. Improving HIV Surveillance Data by Using the ATra Black Box System to Assist Regional Deduplication Activities. J Acquir Immune Defic Syndr 2019;82:S13-S19.
  • Ocampo JMF, Smart JC, Allston A, Bhattacharjee R, Boggavarapu S, Carter S, Castel AD, Collmann J, Flynn C, Hamp A, Jordan D, Kassaye S, Kharfen M, Lum G, Pemmaraju R, Rhodes A, Stover J, Young MA. Improving HIV Surveillance Data for Public Health Action in Washington, DC: A Novel Multiorganizational Data-Sharing Method. JMIR Public Health Surveill 2016;2(1):e3.

Partner Services

  • Hart-Malloy R, Shrestha Tarak, Pezzulo MC, Patterson W, Gunn JKL, Johnson MC, Tesoriero JM. Data to Care Opportunities: An Evaluation of Persons Living With HIV Reported to Be “Current to Care” Without Current HIV-Related Labs. J Acquir Immune Defic Syndr 2019;82:S20-S25.
  • Tesoriero JM, Johnson BL, Hart-Malloy R, Cukrovany JL, Moncur BL, Bogucki KM, Anderson BJ, Johnson MC. Improving Retention in HIV Care Through New York’s Expanded Partner Services Data-to-Care Pilot. J Public Health Manag Pract 2017;23(3):255-263.

Evaluation

  • Dombrowski JC, Hughes JP, Buskin SE, Bennett A, Katz D, Fleming M, Nunez A, Golden MR. A Cluster Randomized Evaluation of a Health Department Data to Care Intervention Designed to Increase Engagement in HIV Care and Antiretroviral Use. Sex Transm Dis 2018;45(6):361-367.
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