Health Data Utilities Could Provide Needed Public Health Infrastructure 

In states, clinical, public health and Medicaid administrative data are not integrated, which fragments clinical care and limits states’ ability to see cross sector data or manage complex tasks such as the twice-yearly Medicaid redeterminations and work requirements that will be mandated by federal law beginning in 2027.

Patient Example: Maya is a 12-year-old Medicaid beneficiary with neuromuscular scoliosis. She receives services from an academic medical center, a community emergency department, and a local food pantry. But when she arrives at the emergency department, clinicians cannot see her medical history or information about her food insecurity. While the data exist, it sits in clinical silos, risking her health and creating fiscal liability for state programs

The federal Trusted Exchange Framework and Common Agreement handle interstate clinical data transport but fail to aggregate state-governed datasets like Medicaid claims.To address this gap, federal and state policymakers should consider establishing a health data utility (HDU) infrastructure. HDUs can collect and analyze state and community datasets, including Medicaid claims, Prescription Drug Monitoring Program records, and health-related social need data.

State Example: In 2022, the Maryland legislature designated the Chesapeake Regional Information System for our Patients (CRISP) as an HDU, mandating aggregation of clinical, public health, and administrative data. CRISP provides primary care practices with monthly risk scores for potentially avoidable hospitalizations, covering approximately 43% of Maryland Medicare fee-for-service beneficiaries

A new Milbank Quarterly article proposes a federal-state governance model for state-designated HDUs. Under this model, states would build and operate local data infrastructure, and the federal government would provide regulatory flexibility and financial incentives.  Funding would come from a combination of:

• State general funds
• Medicaid enhanced matching
• Commercial payer fees and contriburtions
• Value-based payment integration.