Better Together: How Cross-Agency Data Sharing Can Improve the Care Continuum for People Living with HIV/AIDS

Sharing health data about people living with HIV/AIDS (PLWHA) across state agencies can be challenging, but evidence shows working through the related legal and technical barriers can be worth it. Successfully sharing data allows states to assess how well clinical and supportive care services are addressing the needs of their population.

Virologic Suppression: When antiretroviral therapy (ART) medication is used to reduce the amount of HIV in the blood and bodily fluids to undetectable levels, achieving what is known as virologic suppression. Achieving and maintaining virologic suppression is important to PLWH because it helps them stay healthy and can prevent the transmission of the disease to others.

It can also help states improve systems of care based on population characteristics and utilization data gleaned from multiple data systems. The state of Georgia has started to put these practices into effect, leveraging an existing data use agreement (DUA) to gather data across agencies, and then using that data to target key improvements to improve rates of virologic suppression in HIV-infected, Medicaid beneficiaries.

Importance of Data Sharing for HIV Viral Suppression
Retention in care combined with antiretroviral therapy can help PLWHA achieve virologic suppression, improving health outcomes and reducing the risk of HIV transmission to others. Both state Medicaid departments and state public health agencies, which handle programs relating to HIV surveillance, prevention, care, and treatment collect data that can help them determine whether or not Medicaid-eligible PLWHA are connected to care and treatment, and eventually achieve virologic suppression. However, helpful data is usually siloed. HIV surveillance/prevention data (such as rates of virologic suppression) is housed within public health agencies, whereas individualized Medicaid claims data is housed within the state Medicaid agency.

Georgia’s HIV Health Improvement Affinity Group Project
Over the past 12 months, NASHP has worked with the Health Resources and Service Administration (HRSA), the Centers for Medicare & Medicaid Services (CMS), and the Centers for Disease Control and Prevention (CDC) on the HIV Health Improvement Affinity Group. This voluntary initiative provides 19 states with opportunities for peer-to-peer learning and technical assistance to help them improve collaboration across state health department HIV and Medicaid programs. The ultimate goal of the work is to increase rates of virologic suppression among PLWHA. Most of the participating states have focused their work on enhancing data-sharing capacity and developing ways to use shared data to improve access to and retention in care.

Georgia joined the HIV Health Improvement Affinity Group with the goal of identifying the extent that HIV-positive Medicaid beneficiaries were achieving virologic suppression. To improve their analyses, Georgia’s Medicaid and public health departments knew they needed to be able to share data. Since the exchange would include Medicaid beneficiaries’ personally identifiable data (PID), the state agencies were required to use a data use agreement (DUA). DUAs are legally binding agreements, for instance between a state Medicaid department and an external entity, that ensure the security and safety of personally identifiable data.

HIV Care Continuum Stages:

  • Diagnosis of HIV infection
  • Referral to medical care
  • Staying in (retention) medical care
  • Treatment with antivirals
  • Achieving viral suppression

Georgia was able to leverage a DUA that was already in place for the Department of Community Health, which housed both the Medicaid and public health departments. The original DUA included a section allowing Georgia’s Medicaid program to share person-level data about patients with HIV-related claims with the public health department in order to improve surveillance efforts. As part of the HIV Affinity project, Georgia used the data to generate an HIV care continuum – a model that shows the proportion of PLWHA who are engaged at each stage of HIV treatment, from diagnosis to virologic suppression.

In its continuum analysis, Georgia was able to match 83 percent of Medicaid beneficiaries with HIV-related claims to entries in the Enhanced HIV/AIDS Reporting System (eHARS) database. Based on the matching beneficiaries, the state generated a continuum showing the proportion of those retained in care (beneficiaries with at least two visits within 90 days) and those who were virologically suppressed. In their initial results, officials found they had better rates of retention than they expected, with almost all matched beneficiaries in care. Policy makers in Georgia predict they will improve the accuracy of their analysis and outreach efforts in the future by incorporating data for all Medicaid beneficiaries, including those without HIV claims who are not yet engaged in care.

Enhanced HIV/AIDS Reporting System (eHARS) is a database used by states to collect, manage and report HIV/AIDS cases surveillance.

Georgia continues to refine its analyses of the data covered in their interagency DUA to support state efforts for outreach and retention in care. Their experience demonstrates the value of tackling the sometimes complex process of exchanging data between state agencies. Pulling together data from multiple systems — as Georgia did to construct its HIV care continuum — can generate new insights and understanding among policymakers, programs, and practitioners.

More Resources for States
Best practices and promising solutions for states wanting to expand their data-sharing capabilities will also be a focus of an upcoming toolkit and national webinar that will support state inter- and intra-agency collaboration, in order to improve quality of care for — and ultimately improve rates of virologic suppression — among Medicaid and CHIP beneficiaries living with HIV/AIDS. Stay tuned to and our e-newsletter for more resources!