Legal Analysis Offers Insights for Improved Data Sharing, Better Health

State public health and Medicaid agencies each collect large amounts of data, and sharing that data across agencies could offer a more complete picture of residents’ health and the factors that shape it. To support expanded data sharing, The Pew Charitable Trusts commissioned a first-of-its-kind legal analysis of federal and state laws governing how such critical information is shared. The white paper, released June 22 by Texas A&M University, can help state policymakers and leaders better understand their own laws, navigate areas of uncertainty, and identify opportunities to strengthen practices in ways that improve health outcomes.

Each set of data has its own purpose, but looking at them together provides a fuller picture. For example, public health data—such as disease surveillance and vital statistics (data on events like births and deaths)—can offer insights into the health of communities broadly. Data collected by state Medicaid agencies, meanwhile, provides information on individual patient care, shedding light on care patterns, costs, and health outcomes. Together they paint a clearer, more complete view of a state's health, which can inform each agencies’ efforts.

And that can help state policymakers better assess health issues within their communities and make smarter decisions about how to use limited resources, ultimately helping people live healthier lives.

But how and when this data can be shared is governed by a complicated mix of federal and state laws. The complexity can be difficult for states to navigate, inhibiting efforts to bring these critical data sources together to support health improvement efforts, all while also ensuring that data privacy standards are maintained.

Navigating a complex legal landscape

The rules that govern data sharing between these state agencies vary depending on which direction the data is moving, whether from Medicaid to public health agencies or vice versa. The Texas A&M white paper lays out current state rules and policies on both.

Data from Medicaid to public health agencies

Federal laws set the baseline for how Medicaid data can be shared, generally limiting that to program administration. This can include activities such as establishing program eligibility and providing services to Medicaid beneficiaries. States do have flexibility on how they choose to administer the Medicaid program, resulting in variations in how they define acceptable data-sharing activities. For example, the analysis found that 11 states have established rules permitting the sharing of Medicaid data with public health authorities to support administration of the Medicaid program; eight of those explicitly name public health agencies as authorized recipients.

Data from public health to Medicaid

Rules around sharing public health data can be even more complex than sharing Medicaid data because the rules differ depending on what type of data an agency is looking to share. The analysis evaluated three primary types of public health data—vital records, immunization data, and syndromic surveillance data. The researchers found that vital records have the most well-established rules around sharing with Medicaid agencies—49 states allow sharing of this data. Similarly, 39 states have laws that expressly permit the sharing of immunization data with Medicaid agencies or public health authorities.

In contrast, only six have laws specific to sharing syndromic surveillance data. Syndromic surveillance monitors clinical data to detect unusual patterns of illness in a community, but the specific information—which can include data from emergency department visits, urgent care practices, over-the-counter medication sales records and other sources—varies widely from state to state. In cases where a specific law related to syndromic surveillance doesn’t exist, broader laws that apply to any identifiable information collected by public health authorities might be applicable. However, these laws are not written specifically for syndromic surveillance systems, adding a degree of uncertainty for state agencies.

Identifying opportunities for expanded data sharing

The report underscores just how complex the legal landscape can be for sharing Medicaid and public health data. To expand such data sharing, state policymakers and agency leadership can:

• Review current state laws to understand what is already permitted and where there may be opportunities to build on existing authorities.
• Identify opportunities to expand data sharing under existing laws, including clarifying areas of ambiguity through tools such as state attorney general opinions or internal agency memoranda.
• Consider targeted changes to state law, where needed, to better support and sustain expanded data sharing efforts over time.

By taking these steps, states can navigate the complex rules more confidently and make meaningful progress toward stronger, data-driven collaboration.

Julia Heath is a senior associate, Rachel Zetts is a senior officer, and David Hyun is a director with The Pew Charitable Trusts' state health solutions project.