HHS Should Expand Access to Health Data

The federal government is sitting on a trove of data that could revolutionize how we understand Americans’ health. As Health and Human Services secretary Robert F. Kennedy Jr. implements his Make America Healthy Again agenda, he should use government data to create a centralized source of anonymized health information. Granting real-time access to this data would rebuild trust in the medical establishment and allow researchers and policymakers to evaluate the efficacy of public-health interventions.

Roughly a third of all Americans receive federal health care through Medicare, Medicaid, Veterans Affairs, TRICARE, Federal Employee Health Benefits, and/or the Indian Health Services. Each program generates reams of health data—claims, hospital admissions, prescription records, diagnostic codes, and more—but researchers must navigate a thicket of inconsistent procedures to access it.

That could finally change. In July, HHS announced its Living Open Data Plan, which pledges to provide health data in machine-readable and readily accessible formats. The details are scarce, but the plan provides an opportunity for HHS to democratize availability of information, unify federal agencies’ health data, and give policymakers access to real-time metrics.

The data are already at lawmakers’ fingertips. The Center for Medicare and Medicaid Services contracts with the Research Data Assistance Center to retain CMS health data. The Office of Personnel Management oversees the Health Claims Data Warehouse, which retains the health information of millions of federal workers and families. Data possessed by Veterans Affairs and TRICARE have already yielded massive insights. Researchers used Google’s DeepMind and VA data to build a model that predicted kidney failure 48 hours in advance.

Expanding access to these databases could help policymakers and researchers evaluate the efficacy of the MAHA agenda. For example, they could reveal whether states that banned food dyes or restricted ultra-processed foods saw reductions in ADHD diagnoses, behavioral problems, or obesity. Researchers could use this data to study whether indoor air-quality upgrades in federal buildings corresponded with reductions in respiratory ailments, sick days, or health-care costs.

A more lasting solution, however, would be to consolidate these sources into an easily accessible national health database. Today, various agencies maintain siloed databases with inconsistent formats, standards, and access rules. Tapping into these sources involves multi-month approval processes with unpredictable costs and complex data-sharing agreements. Some institutions, such as the VA, limit access only to affiliated researchers.

These limitations hinder America’s ability to compete with countries that run unified data systems. In the U.K., various platforms allow researchers to analyze millions of NHS records of anonymized patient data with strict privacy protections; during the COVID pandemic, these systems allowed for rapid data analysis. Similarly, France’s National Health Data System, covering 99 percent of the population, has informed hundreds of drug safety studies.

America’s federal agencies should follow these countries’ lead and consolidate health statistics into a central database. HHS should collate the data, which will require standardizing various agencies’ diagnostic codes, prescription records, and demographic information.

Consolidating this information will help policymakers make real-time evaluations of new interventions. For example, HHS officials could use this national database to create a public dashboard reporting anonymized, real-time metrics on health outcomes, such as asthma and diabetes incidence. Such a dashboard could form the basis for evidence-based health policymaking, similar to how the Bureau of Labor Statistics anchors economic policy with its employment and inflation data.

The United States faces a life-expectancy crisis, a chronic-disease quagmire, and a crisis of confidence in its public-health institutions. Creating an easily accessible federal health database may be the most powerful tool available to address these challenges. The question is whether policymakers will seize this opportunity or allow the government’s data to remain locked away in bureaucratic isolation.

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