On August 21, Rep. Scott Peters (D-CA), Rep. Lucy McBath (D-GA), Rep. Anna G. Eshoo (D-CA), and Rep. Brian Fitzpatrick (R-PA) introduced the bipartisan Health Standards to Advance Transparency, Integrity, Science, Technology Infrastructure, and Confidential Statistics Act of 2020 (Health STATISTICS Act).
This legislation builds on the Foundations for Evidence-Based Policymaking Act of 2018 by addressing the weaknesses of our public health surveillance system by ensuring the Centers for Disease Control and Prevention (CDC) and the public have access to timely accurate and actionable data critical to pandemic response. Currently, public health data is difficult to rapidly collect from multiple states because of IT resource constraints, inconsistent reporting requirements, and data definitions that vary by state.
The bill aims to address these challenges to allow the statistical use of public health survey and administrative data for evidence building, support existing efforts to modernize health surveillance systems, and pilot a public health data linkages program within the National Center for Health Statistics.
Establish Common Data Standards
The bill directs the CDC to adopt public health technical and reporting standards. It establishes a technical working group of Health and Human Services agency heads to make on-going recommendations to establish these standards. The Chief Statistician of the U.S. is also directed to issue guidance on Federal health data collections on how to reduce reporting burden, ensure quality, and improve access to health data for evidence-building activities.
State Health IT Grants
This bill also authorizes the National Center for Health Statistics to award grants, contracts or cooperative agreements to state and local reporting entities in order to help standardize their data for reporting to the federal government.
Public Health Data Systems Linkage Program
A data systems linkage program would be established within the National Center for Health Statistics, which would include statistical data sets with administrative data from CDC, CMS, ONC and other Departments and agencies such as the Environmental Protection Agency, Housing, and Urban Development, Department of Education, Veteran’s Affairs and the National Oceanic and Atmospheric Agency.
There is $100 million authorized for this project to sustain the ongoing effort, which will provide controlled access by researchers with appropriate privacy protections through fiscal year 2024.
This program is especially important because of its potential to serve as a pilot for a long term national data service. A national secure data service can help meet researcher needs inside and outside of the government to rapidly analyze and understand data collected across federal agencies to better understand the impacts of policy interventions, and therefore, assist policymakers in making evidence-based decisions even beyond public health decisions.
There is also an authorized appropriation of $100 million for each fiscal year until 2024 that would support researchers and policymakers at the state and local levels to use linked health data files. This will include, among other data sets, immunization information, electronic case reporting, and patient unified look-up systems, and the National Death Index.
This bill is an important step forward in addressing the weakness in our public health surveillance system. Standardizing data standards and increasing data sharing and improving access to privacy-protected data. The proposals in this bill make concrete, important steps forward in addressing the challenges that have prevented the gathering of accurate, timely, and reliable data. With these improvements, policymakers will have better evidence to inform their decisions.
Congress should act quickly to advance this legislation to improve the state of public health data especially with how vital these changes are to the health and well-being of people across the country.