Reps. Eshoo, Peters, McBath, Fitzpatrick Re-Introduce Bipartisan Bill to Improve Data Sharing Efforts Crucial to COVID-19 Response
WASHINGTON, D.C. – Yesterday, Rep. Anna G. Eshoo (CA-18), Rep. Scott Peters (CA-52), Rep. Lucy McBath (GA-06), and Rep. Brian Fitzpatrick (PA-01) re-introduced the bipartisan Health STATISTICS Act to rapidly improve data collection and accessibility to better inform our nation’s real-time response to public health crises. The bill answers escalating calls from experts, lawmakers and public health professionals to fix information gaps and barriers exposed in the United States data infrastructure during the COVID-19 pandemic that have significantly slowed the government’s response to address the true scope of the outbreak.
“As our nation surpasses 26.2 million COVID-19 cases and we see new variants infecting members of our communities every day, accurate and comprehensive data on how and where this virus is spreading is essential to controlling the spread,” said Rep. Eshoo. “The Health STATISTICS Act will address the inconsistencies in reporting public health data, ease burdens on state and local public health departments by creating a standard process, and save money and lives. A standardized data collection system will also help the nation address health crises such as maternal mortality, the increase in the suicide rate, and preventable pediatric deaths and better prepare us for public health crises in the future.”
The Health STATISTICS Act of 2021 takes immediate steps to streamline data sharing agreements, remove data siloes, and fix the patchwork of data systems responsible for recording and reporting vital statistics.
Currently, the reporting of COVID-19 case and vaccine statistics, like patient demographics or cause-of-death information, is not compulsory and leaves health care providers and policymakers in the dark as they work to tackle the virus. Ad hoc data sharing agreements and data siloes between the federal government and states further impede swift action and make it extremely difficult for researchers to combine different data sources that would improve our ability to track the virus.
“As new variants of COVID-19 evolve and spread, Congress must stand-up a unified national data strategy now. The Health STATISTICS Act offers a straight-forward, fast solution to ensure experts and decision-makers have the granular data needed to strategically track and fight the virus. Without improving data standardization and accessibility, we will not understand the real effects of COVID-19 or the efficacy of our response,” said Rep. Peters. “This disease has claimed over 443,000 American lives - mothers, fathers, grandparents, spouses, children gone forever. We owe it to those we’ve lost, those grieving and those forever changed by this pandemic to accurately record what is happening and react based on thorough analysis.”
“We are nearly one year into this crisis, and it continues to drastically affect the lives of every single American. We must continue to do all we can to save American lives and support our workers, families, and health care personnel,” said Rep. McBath. “Standardized, accessible public health data is critical in the fight against pandemics, and we must expand and integrate the rigorous data standards already in place at agencies like the CDC. I’m proud to co-lead the Health STATISTICS Act so that we can better fight COVD-19 and better prevent future pandemics.”
“In order to bolster our state and local public health professionals’ efforts to combat COVID-19 and future outbreaks, we must improve standardized interagency data sharing between our federal agencies and states while optimizing our nation’s public health surveillance system,” said Rep. Fitzpatrick. “The bipartisan Health STATISTICS Act will help achieve better patient outcomes and will save more lives by providing researchers with greater access to higher quality data. Our bipartisan legislation will also modernize our nation’s data infrastructure so that our public health infrastructure can meet immediate surveillance, reporting, and other outbreak management needs.”
Specifically, the Health STATISTICS Act would:
- Establish a dedicated working group, as recommended by the U.S. Government Accountability Office (GAO), to set data collection and reporting standards for key health indicators, with a particular focus on the social determinants of health. The group must also develop common data standards for the highest-priority COVID data elements. This must be done within 30 days of the bill’s enactment and would ensure that public health officials have access to comprehensive data that can inform decision-making in near-real-time in their response to COVID–19 and future preparedness.
- Expand the existing data linkage program at the National Center for Health Statistics to allow for the temporary linkage of data across multiple sources, including genomic data, clinical data and epidemiological data. This will be critical to better coordinate public health research as the virus mutates and spreads. The program carries out important proposals from several reports, including the National Strategy for the COVID-19 Response and Pandemic Preparedness, President Biden’s recent memorandum on restoring trust in government through scientific integrity and evidence-based policymaking, and the National Academies of Science’s “Genomic Epidemiology Data Infrastructure Needs for SARS-CoV-2: Modernizing Pandemic Response Strategies.”
- Direct the Department of Health and Human Services (HHS) to share health data collected from reporting entities with the CDC, other public health agencies, and the public while preserving individual privacy.
- Create a grant program for state, local, tribal and territorial public health departments for the expansion and modernization of public health data systems.
The Health STATISTICS Act boasts support from a number of organizations and leading experts in public health and data policy.
“This bill is the most important development in making vital statistics data electronically available and broadly actionable in the last 40 years,” said Christopher A. Longhurst, MD, MS, Professor in the Departments of Biomedical Informatics and Pediatrics at UC San Diego Health.
“The COVID crisis has revealed several flaws in our country's health care system, one being the absence of interagency protocols for reporting or sharing data. The lack of data shared at the national level has a direct impact on frontline heroes at the local level and effects the quality of care patients receive,” said Charles Rothwell, former Director of the National Center for Health Statistics (NCHS) within the CDC. “Statistics are made up of data points that represent the living truths of real people: our loved ones, family, friends, community members. Each is consequential in providing experts with information that can make an immense difference if their data is used wisely. The good news is that the Health STATISTICS Act would do just that, revolutionizing the way we use data by finally standardizing and modernizing our infrastructure while maintaining the critical balance of accessibility and confidentiality. With this bill, we would be capable of spotting public health emergencies as soon as they begin and intervene early, saving countless lives.”
“The enduring effects of the pandemic on our country continue to suggest we need major, rapid improvements to data linkage and analytics capabilities for public health data,” said Nick Hart, President of the Data Foundation. “Our Data Coalition Initiative strongly supports the long-overdue Health STATISTICS Act as a common-sense approach for enabling secure linkage, planning for data standardization, and enabling future innovation using data.”