A New Playbook: State-Driven Solutions for Resilient Health Data

Area of Science:

• Public Health Data Infrastructure
• Health Equity Research
• State-Level Policy Analysis

Background:

• Health equity is contingent upon data equity, ensuring community representation in data for disparity identification and accountability.
• Federal health data infrastructure changes and capacity reductions create uncertainty for state public health officials.
• Investing in resilient state data infrastructure is a priority for population health outcomes.

Purpose of the Study:

• To examine the impact of federal health data infrastructure changes on state data equity capacity.
• To identify policy responses for states to advance data equity.
• To synthesize evidence on state-level data disaggregation legislation, interoperability, governance, and dissemination.

Main Methods:

• Review of state data disaggregation legislation across the US.
• Case study analysis of the California Health Interview Survey (CHIS) as a model for operationalizing data mandates.
• Synthesis of evidence on data interoperability, governance frameworks, and dissemination strategies.

Main Results:

• Several states are expanding data collection beyond federal minimums, including detailed race/ethnicity subgroups and categories for Middle Eastern/North African populations.
• Legislation in states like Colorado and Oregon includes data collection on sexual orientation, gender identity, and disability status.
• Persistent challenges include incomplete demographic data, workforce and interoperability gaps, and the need for robust privacy-preserving governance.

Conclusions:

• State-led data infrastructure development is essential for effective public health practice and achieving health equity.
• An ecosystem of interoperable, inclusive, and community-accountable data systems is needed, rather than 50 incompatible systems.
• Realizing this vision requires diversified funding, cross-agency coordination, strong governance, and community engagement to sustain progress in measuring disparities.