The COVID-19 pandemic exposed limitations in the nation’s public health data infrastructure. Though the dedication and determination of local, state, and federal public health professionals contributes greatly to the generation of valuable public health data, the workload volume strains the staffing capacity and technology resources necessary to achieve the work. Robust government public health data exists, however, the ability to connect, analyze, and disseminate such data lags. Significant improvements to the system are needed to create a modern public health data infrastructure to prepare our nation for future crises – whether that is a pandemic, an extreme weather event, or further surge in drug overdose deaths. Vital records lay the foundation for U.S. public health data infrastructure, documenting milestone life events such as birth, marriage, and death. Vital records provide official documentation of identity, relationships, and ownership rights, and the data they provide enable insights into birth and mortality trends that can improve public health. The current system is a patchwork of 57 separate state and local vital records offices (VROs) – including all 50 states, five U.S. territories, Washington D.C., and New York City – with locally-determined priorities. Some VROs are highly sophisticated and leverage the latest technologies, while other offices are only beginning to modernize.
Local autonomy is a core function of federalism, however, protecting the nation from public health threats must also be a priority, and that requires leadership that can come only from the federal government. The inherently intergovernmental nature of the U.S. vital records systems introduces complexities and inconsistencies among jurisdictions, and has done so for years. The earliest review of vital records, nearly 200 years ago, noted they were “very imperfect and unsystematic.”
Key challenges to the current system include:
-
Locally-determined and user-dependent funding, with limited and inconsistent federal support, creates underinvestment in vital records data infrastructure and leads to various levels of technology maturity across the country.
-
Varied, locally-defined data definitions limit comparisons and data linkage, and impedes timely insight from data sharing.
-
Inconsistent quality of death certificate data severely impacts an accurate national picture of public health. Further, death data are neither timely nor granular enough for certain key research purposes.
A timely, digital, and interoperable vital records data platform will enhance the function of government in various ways, creating new efficiencies and revealing insights that transform how the government serves the American public – including generating significant value for the public through early identification of diseases and other public health threats, while streamlining verification of identity, age, and benefits eligibility and preventing improper payments to deceased individuals. Further, a national platform would remove significant burden from states that choose to opt in, enabling them to invest their resources according to their own priorities.
As steps are taken to modernize the system, certain considerations must inform any approach. Society will continue to become increasingly digital, which means that a robust privacy framework is imperative for public safety and to build trust. Technology will also continue to rapidly evolve and a future system must be agile and adaptable to support longevity.
Various agencies and government bodies will need to work together to build a digital, interoperable, and timely public health data infrastructure, including Congress, the Centers for Disease Control and Prevention (CDC), and the Social Security Administration (SSA). To achieve a more efficient, effective future vital records system, the Data Foundation recommends:
Improve the quality of vital records data by advancing data standardization and by supporting those who certify deaths.
Increasing the standardization of vital records data and supporting and establishing professional standards for death certifiers are necessary to develop an accurate national picture of public health threats and eligibility for federal payments. The CDC, SSA, the National Centers for Health Statistics, and Congress should take steps to develop field-driven consensus data and metadata standards for birth and death data across federal, state, and local jurisdictions and provide technical assistance and capacity-building support for death certifiers.
Create a national vital records data platform that state and local vital records agencies can opt into.
Federally created and funded, and locally populated, a national platform would replace the current patchwork of locally-tailored systems of varying quality and cost. Authorized researchers would be provided access to de-identified data via secure connections through federally supported research data hubs, and actionable data and insight would be accessible to public health officials at each level of government. With funding from Congress, the CDC, and SSA should work together to develop a single platform for VROs to create, record, and store birth and death data in a consistent, timely manner, and develop a roadmap for VROs to transition gradually to use of the new platform.
In the same way the interstate highway system paved the way for growth in interstate commerce, the federal government can improve the vital records data system to build a public health data infrastructure that better supports the health of the American people.
