NSC Alliance Endorses Call for Protecting COVID-19 Patient Data

On July 10, 2020, the Department of Health and Human Services (HHS) issued a notice ordering hospitals to bypass the Centers for Disease Control and Prevention (CDC) and send all COVID-19 patient data to a centralized database effective July 15, 2020.  The directive raised concerns about transparency and public access to data for researchers as well as public health officials across the country.

According to the order, HHS, and not CDC, will now collect daily reports about COVID-19 patients being treated at each hospital, the number of beds and ventilators available, and other information related to tracking and monitoring the pandemic.  The new guidance also states that if hospitals were reporting this information to their states, they “may be relieved from reporting directly to the Federal Government if they receive a written release from the State stating that the State will collect the data from the hospitals and take over Federal reporting responsibilities.”

It is not clear if the new centralized HHS database — managed by TeleTracking, a Pittsburgh-based health data firm — will be open to the public, according to the New York Times.  This could impact the work of researchers, modelers, and health officials who currently rely on CDC data to make projections and important decisions regarding the ongoing health crisis.  Questions have also been raised about whether the contract to TeleTracking was properly awarded.  “Given the importance of collecting this data as quickly as possible, I have several questions about the Trump Administration’s decision to award a multimillion dollar contract on a non-competitive basis to create a seemingly duplicative data collection system,” stated Senator Patty Murray (D-WA), Ranking Member on the Senate Committee on Health, Education, Labor, and Pensions.

According to officials, the change will streamline data gathering and assist the White House coronavirus task force in allocating resources such as personal protective equipment.  HHS spokesperson Michael Caputo called the CDC’s system inadequate.  He said that the two systems would be linked and CDC would continue to make data public.  “Today, the CDC still has at least a week lag in reporting hospital data,” said Caputo.  “America requires it in real time.  The new, faster and complete data system is what our nation needs to defeat the coronavirus, and the CDC, an operating division of HHS, will certainly participate in this streamlined all-of-government response.  They will simply no longer control it.”

The move has been criticized by former government health officials.  “Centralizing control of all data under the umbrella of an inherently political apparatus is dangerous and breeds distrust,” said Dr. Nicole Lurie, former Assistant Secretary for Preparedness and Response at HHS.  “It appears to cut off the ability of agencies like CDC to do its basic job.”  Representative Donna Shalala (D-FL), who served as the Secretary of HHS under President Bill Clinton said: “Only the C.D.C. has the expertise to collect data… I think any move to take responsibility away from the people who have the expertise is politicizing.”

The NSC Alliance has endorsed a community letter led by the Infectious Diseases Society of America, HIV Medicine Association, American Society for Microbiology, and American Public Health Association, urging the Trump Administration to reverse its decision to bypass the CDC in the collection of COVID-19 patient data in order to maintain the integrity of the data and keep public health data public.  The letter calls for investing in data reporting at the CDC and highlights the importance of the data to inform state and jurisdictional responses.

Read the letter.