The United States has yet to standardize national, state, county or city-level public reporting on COVID-19, providing experts only 40 percent of the data needed to fight the pandemic and significantly slowing the government’s response to measure the true scope of the outbreak. As former Centers for Disease Control and Prevention (CDC) director Dr. Thomas R. Frieden has pointed out, without standardization across all 50 states, the assembly and utilization of data from sources such as public health departments, labs, clinics, and hospitals, is nearly impossible. It also means reporting important statistics like patient demographics or turnaround times for test results are not compulsory, leaving health professionals and policymakers ‘in the dark’ as they work to tackle the virus.
The bipartisan Health STATISTICS Act would address these issues head-on by streamlining reporting requirements, enforcing coordination between federal and state agencies and helping boost data infrastructure in regions that need it. Specifically, the bill would 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. It would require the Secretary of HHS acting through the CDC to designate data and technology standards and set common reporting criteria for the highest priority data elements, as well as create a grant program for state, local, tribal and territorial public health departments for the expansion and modernization of public health data systems.
“In order to bolster our state and local public health professionals’ efforts to combat COVID-19 and future outbreaks, we need to improve standardized interagency data sharing between our federal agencies and states while optimizing our nation’s public health surveillance system,” said Fitzpatrick. “The bipartisan Health STATISTICS Act will help achieve better patient outcomes and will save more lives by providing researchers with better access to higher quality data and would modernize our nation’s data infrastructure so that our public health infrastructure can meet immediate surveillance, reporting, and other outbreak management needs.”
“With over 5.59 million coronavirus cases nationwide and counting, provisions within the Health STATISTICS Act have never been more necessary,” said Peters. “Efforts to combat this crisis are heavily stifled by our country’s lack of a cohesive, consolidated data system. We don’t have the granular data we need to strategically fight the virus or understand the unique risks and effects of COVID-19 on vulnerable populations. Our bill would ensure vital information often missing from current reports, such as race or mortality data, is collected and shared accordingly so that patterns can be found and relief can be more rapidly deployed. As the New York Times’ editorial board pointed out, these are crucial pieces to help get the pandemic under control faster.”
"This pandemic has caused grief for thousands of families, the financial difficulty for millions of workers, and drastic changes to the lives of every American. My heart breaks for those who are hurting across America. We must do all we can to save American lives, and ensuring that public health data is standardized and accessible is fundamental in that fight,” said McBath. "By improving data standards and integration, our public health agencies can better mitigate the effects of COVID-19 and prevent future pandemics. The Health STATISTICS Act will build upon the important gains made in the CARES Act and apply rigorous standards to the data modernization efforts already underway at the CDC and other public health agencies."
“Important public health data are not consistently reported using standard definitions, impairing our nation’s ability to respond to health crises, including the coronavirus pandemic, maternal mortality, the increase in the suicide rate, and preventable pediatric deaths. Access to reliable, high-quality public health data through the Health STATISTICS Act will serve as a North Star to guide public health officials,” said Eshoo. “Modernizing and standardizing public health reporting will reduce burdens on state and local public health departments and save money and lives.”
The Health STATISTICS Act boasts support from a number of organizations and leading experts in public health and data policy.
“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 Health STATISTICS Act is a game-changer. It is a foundation for bringing rationality and better utilization to public health data in this country while strengthening privacy protections,” said Dr. Nancy Potok, former Chief Statistician of the United States. “The bill fills in gaps that have held back public health officials from understanding and acting on our greatest health challenges. Those gaps may have cost us millions of dollars and thousands of lives. If the key provisions of this bill had been enacted and implemented before the pandemic hit, we would have been much better prepared as a nation to have the timely, relevant information needed to act quickly and effectively at all levels of government.”
“The pandemic highlights something we have known for years – that our country’s data infrastructure needs continuous improvement and resources to adjust to emerging priorities. The lack of certain health data standards limits our ability to reliably and meaningfully use data to generate insights for decision-makers inside and outside government,” said Nick Hart, CEO of the Data Coalition. “The bipartisan Health STATISTICS Act promotes the rapid adoption and use of existing data standards created by industry and non-profit partners, while also planning for future data innovation. The Data Coalition is pleased to endorse the Health STATISTICS Act legislation that will ultimately support evidence-based decision-making, higher quality open data, and responsible data sharing. The Data Coalition members look forward to the rapid advancement of this important legislation that will result in much-needed and long-overdue improvements to public health data standards.”
"The COVID-19 pandemic highlights the urgent need to modernize our public health data infrastructure. Policymakers and researchers must be able to access innovative, complete, and timely data,” said the Center for Public Health Initiatives (CPHI). “The CPHI enthusiastically endorses the Health STATISTICS Act which will support state and federal agencies in their efforts to ensure the nation can respond to public health needs with the best possible information."