U.S. Senator Mitt Romney (R-UT) proposes a new data agency to improve access to impartial and objective public health data that would bolster our infectious disease intelligence and preparedness. This data already exists in electronic forms across laboratories, clinics, and hospitals, but is incomplete and fragmented across the Department of Health and Human Services (HHS) and is not shared quickly enough to drive decision making. The Center for Public Health Data (CPHD) would aggregate this existing data to make it more accessible in real time. A two-pager of the proposal can be found here.
“Throughout the course of the COVID-19 pandemic, we have seen how the United States’ public health data reporting has failed to deliver critical and comprehensive information to the American people in order to respond to the pandemic. We had to stand up a brand new entity in short-order to respond, which was not a sustainable model and will not leave us prepared for the future,” Senator Romney said. “We have again seen the shortcomings as monkeypox has started to spread around the country. These failures show the need for reliable, real time data during days of blue-skies so we can better prepare for and potentially prevent major outbreaks.”
“I applaud Senator Romney and his staff for the work they are doing to modernize America’s public health data reporting systems. The woeful state of public health data reporting has been a crisis for far too long and it has severely hampered America’s response to drug overdoses, food safety outbreaks, and infectious diseases, most notably COVID-19. It is my hope that Senator Romney’s colleagues on both sides of the aisle will follow his leadership. He will need the help of America’s private sector and public health agencies to build a system that allows everyone in America to have access to reliable, trustworthy, real time public health data so our nation’s experts and families can make the best decisions to protect our communities.” – Joseph Grogan, Visiting Fellow at the USC Schaeffer Center, former Assistant to President Trump for Domestic Policy and member of the COVID-19 Task Force
“There are two things needed to move from theoretic pandemic preparation to pandemic response: first, is definitive laboratory diagnosis of all community acquired infectious diseases and second, a comprehensive database with this data in real-time from across the United States to make infectious diseases spreading in communities visible. This will ensure rapid access to counter measures and rapid identification of new threats. The united single source national database bringing together the private and public sector will transform our ability to respond with an integrated, cost effective whole-of-government support, and bring us into the twenty-first century, ensuring we all survive and thrive the current and future threats.” – Deborah L. Birx, Senior Fellow Bush Institute and previous Global AIDS Coordinator for the Obama and Trump Administrations 2014 to 2021.
In response to Romney’s proposal, Former United States Commissioner of Food and Drugs Scott Gottlieb tweeted the following: “New proposal from [Senator Romney] creates institution charged with collecting, analyzing, sharing health data needed to respond to outbreaks. This bottom line, real time information is critical to informing response. The proposal recognizes nagging gaps that plagued Covid, monkeypox. Something must change. It isn’t just a failure of CDC to aggregate data, but a cultural unwillingness to feed real time info to inform critical decisions local officials must make. CDC waits too long to produce analytical work; doesn’t share bottom line data for others to analyze. This proposal is a serious effort to create the infrastructure we need to better collect, share data with local officials in a way that protects privacy and security—and doesn’t leave us wholly dependent on CDC’s inclination to hold data until it can do its own analytical work.”
Background on Public Health Data Collection
The early 2000s saw the 9/11 terrorist attacks, Hurricane Katrina, anthrax attacks, concerns of increasing bioterrorism, and a new strain of Avian Flu. As a result, in 2006, Congress instructed HHS to develop capabilities for real time nationwide public health data aggregation for situational awareness that would lead to pandemic prevention and preparedness, electronically.
Since then, HHS has failed to prioritize and deliver consistent, timely public health data for situational awareness, in part because HHS has failed to establish a lead agency to manage, oversee, and govern such a data system. This failure has resulted in miscommunication among hospital systems and public health officials, contributed to the continued rise in public mistrust of our public health institutions, and weakened our nationwide public health awareness for COVID-19 and it also continues to play out in the limited nationally available monkeypox data.
The Center for Public Health Data
The Center for Public Health Data (CPHD) would be a modern data agency, focused exclusively on aggregating comprehensive, de-identified public health data from diverse sources, including local, state, and federal public health units; state health data utilities and exchanges; hospital systems; public and commercial laboratories; and academic and research institutions.
CPHD will be structured as an independent data subagency inside the Department of Health and Human Services (HHS), and led by a Chief Data Engineer. It will serve as an open and transparent repository of information to provide the public, academics, and policymakers objective, unbiased data in real time. A clear picture of the state of public health and disease spread will help policymakers develop and implement informed and proactive policy solutions.
The Center for Public Health Data would:
- Reform existing, but disconnected, public health data streams with a single system of community acquired infectious disease health data to better protect and empower individuals and decision makers.
- Streamline fragmented and duplicative data management efforts that exist across HHS;
- Aggregate already-collected, de-identified data from diverse sources, including hospitals and laboratories, to provide a full, clear picture of the status of public health;
- Provide open access to real-time, de-identified data for public health situational awareness and analysis on an electronic platform. “Real-time” is defined as 24 hours from collection to release.
- Maintain strict confidentiality, privacy, and objectivity of information collected.
- Report daily and publicly on public health data in the United States to enable rapid response policymaking. Rapidly sharing community acquired infectious disease information, such as monkeypox, COVID-19, or influenza outbreaks and forecasting hotspots, will support better health outcomes.
- Partner with states, localities, and public and private entities to modernize public health data infrastructure, improve interoperability, and support information sharing.
- Let high-quality, real-time data stand on their own. The agency would be required only to collect and disseminate high-quality data, with clear and accessible graphics, and would be prohibited from making public health recommendations.
What the Center for Public Health Data could NOT do:
- It could NOT collect personally identifiable information. Information is required to be de-identified from the source, like a hospital or lab, before it is sent to CPHD.
- It could NOT collect information beyond community acquired infectious disease information based on ICD codes. This information already exists, but the government’s fragmented approach to reporting and aggregation renders it unactionable.
- It could NOT provide any public health or policy recommendations. For example, it could not recommend isolation or quarantine guidance, use of personal protective equipment, or declare a public health emergency.
- It could NOT enact public health mandates. CPHD is a data collection, aggregation, and dissemination agency—it is not a regulatory body. For example, it could not recommend mask or vaccine mandates.