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Health Data Utilities as Essential Public Infrastructure: A Cooperative Federalism Architecture
1Johns Hopkins University.
Abstract:
Policy Points Federal interoperability networks transport standardized clinical data but do not aggregate, enrich, or analyze the state-governed data that clinical practice, public health, and Medicaid administration require locally. State-designated health data utilities fill this structural gap through a cooperative federalism architecture in which states build and operate local data infrastructure and the federal government provides regulatory flexibility and financial incentives. The One Big Beautiful Bill Act requires states to implement twice-yearly redeterminations beginning in 2027, creating a unified enforcement cycle that no existing infrastructure can absorb at scale. The health data utility offers the most administratively viable architecture for preventing catastrophic procedural disenrollments as state budgets contract. A four-layer financing model distributes financial risk across state general funds, Medicaid enhanced matching, payer enrichment revenue, and value-based payment integration. Federal action should formalize a health data utility profile within the Trusted Exchange Framework and Common Agreement and confirm enhanced Medicaid matching for shared infrastructure.
Context:
Federal interoperability initiatives like Trusted Exchange Framework and Common Agreement transport clinical records across boundaries but fail to aggregate and enrich state-governed datasets, including Medicaid claims, prescription monitoring records, and social service registries. This fragmentation creates fiscal and administrative liability for states, exacerbated by the One Big Beautiful Bill Act's mandate for twice-yearly Medicaid redeterminations and work verifications beginning in 2027 amidst tightening state budgets.
Methods:
Synthesizing health information exchange literature, existing state operational models (Maryland, Indiana, California, North Carolina), and federal statutory requirements, we propose a cooperative federalism governance model, technical data architecture, and multi-payer financing strategy for state-designated health data utilities (HDUs).
Findings:
We propose an HDU architecture that can be adapted across multiple states, designed to directly advance clinical care delivery by functioning as an enrichment layer integrated natively into electronic health record workflows. By synthesizing longitudinal clinical encounters, controlled substance histories, claims, and social needs registries in real time, the proposed utility would deliver actionable predictive risk scores and automated point-of-care alerts to prevent avoidable readmissions, curtail redundant advanced imaging, and coordinate cross-sector interventions for high-risk patients. Operationally, the model pairs this bedside enrichment with automated eligibility and frailty verification, ensuring high-need individuals maintain continuous access to essential clinical services.
Conclusions:
Clinical data fragmentation is rooted in governance silos rather than technical barriers. Establishing state-designated HDUs through a cooperative federalism model bridges bedside clinical practice, public health, and Medicaid administration. HDUs provide the integrated infrastructure necessary to prevent clinical crises, protect vulnerable populations, and improve care delivery at scale across the United States.
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