The Enhancing Health Data (EHealth) Program serves as the Census Bureau’s hub for administrative health data and research. We partner with external data owners to strategically reuse and link administrative records—particularly health records—to gain new insights on:

1. Patients. To advance understanding of social determinants of health, health care utilization patterns, and drivers of positive health outcomes.
2. Providers.  To learn how health care organizations are evolving and how these changes impact the health care workforce and the cost, quality, and accessibility of care. 
3. Population health. To benchmark and track community health outcomes, including through composite measures of vulnerability, access, and equity.

We structure our efforts around three main areas of work that collectively help to answer some of our nation’s most pressing health care questions: 

1. Innovative data linking strategies. As a foundation for our work, we leverage and enhance the Census Bureau’s unique data infrastructure to facilitate the acquisition, processing, and linking of health records to other data on the nation’s people and businesses. Specifically, we enhance external health data (such as electronic health records (EHRs), health registries, inpatient/outpatient data, or emergency department data) by linking them to Census’ data assets (such as person-level records from the Decennial Census and the American Community Survey and business-level records from the Business Register).
2. Cutting-edge research partnerships. Partnerships and collaboration are at the heart of how we do our work. Specifically, we rely on an involved group of stakeholders and internal and external data partners (federal, state, private, academic) to contribute data and provide subject matter expertise. This joining up of data, expertise, and institutional capabilities enables us to produce cutting-edge research and uncover new insights that any one partner could not have obtained on their own. Our work in this area is facilitated by novel data sharing agreements, effective use of federal research data centers, and long-term research partnerships.
3. Insightful research publications and public data products. Our program’s ultimate purpose is to leverage our data linking work and research partnerships to produce and share actionable insights that improve understanding of patients, health care providers, and population health. While much of our work relies on protected and highly sensitive data, the Census Bureau’s extensive disclosure avoidance infrastructure and our use of robust privacy preservation techniques enables us to share key statistics and research findings with partners, policy makers, and the public. We do this by releasing traditional research papers as well as experimental data products, including in the form of interactive dashboards and data visualizations.

Why Enhance Health Data?

The mission of the Census Bureau is to serve as the nation’s leading provider of quality data about its people and economy. An important part of this mission is to use the data assets already available at Census to explore issues of relevance to the American public and policy makers. Few issues rank as important as US health and health care, as policy makers look to improve health outcomes, lower costs, reduce complexity, and understand the consequences of the COVID-19 pandemic.

Building a better understanding of these trends requires data. This data has traditionally been collected via surveys of patients and providers. Declining response rates and increased costs have led researchers to look for alternative sources of information. In particular, the rapid growth in electronic health records offers a rich new source of continuously collected “big data” on the workings and outcomes of the US health care system. While this brings several benefits over surveys, electronic health records often suffer from a lack of important sociodemographic, economic, and other critical characteristics about the lives of patients that is needed to put this information in context.

Our program seeks to bridge these gaps by enhancing administrative health data so that it can better help answer our nation’s most pressing questions. We do this by linking health records to restricted person- and business-level data maintained by the U.S. Census Bureau and our partners. This data joining promises important new insights as health outcomes are highly correlated with many of the subjects on which the Census Bureau already collects data (income, poverty, race, health insurance, labor markets, and other social determinants of health). By strategically repurposing and linking this already available data, we are building a data infrastructure that empowers researchers, policy makers, and the public to uncover helpful new insights on patients, providers, and population health.

How do we ensure sensitive data are protected?

The EHealth Program works with anonymized health data in a protected environment accessed only by approved researchers to produce innovative statistics and data products. The creation of blended EHR and Census Bureau data expands the type and quality of data products and research that can be created. This allows the public and policymakers to improve decision making by implementing policies that directly impact individuals’ access to care, quality of care, and health outcomes.

The secure disclosure of data derived from EHRs to the Census Bureau satisfies the data owner’s obligation to protect these data as required by the Health Insurance Portability and Accountability Act (HIPAA). Additionally, Title 13 of the U.S. Code authorizes the Census Bureau to collect information from other entities and requires the Census Bureau to keep the information confidential and use it only for statistical purposes. All analyses are conducted within a secure computing environment and data access is limited to the number of individuals necessary to achieve the research objectives. All researchers must successfully complete annual data handling training and are sworn for life to protect the confidentiality of the data. Any and all aggregate statistics using linked EHR and Census Bureau microdata are produced employing robust disclosure avoidance methods in full compliance with the Census Bureau’s confidentiality requirements as required by law (Title 13 U.S.C., Section 9). Finally, all data products are reviewed and approved by the Census Bureau’s Disclosure Review Board (DRB) prior to public release.