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Bullet policy, statements · Jul 17, 2020

Joint Letter on Protecting COVID-19 Patient Data

The Honorable Mike Pence
The White House
Office of the Vice President
1600 Pennsylvania Avenue, NW
Washington, DC 20500

The Honorable Deborah Birx, MD
Coronavirus Task Force Response Coordinator
The White House
1600 Pennsylvania Avenue, NW
Washington, DC 20500

The Honorable Alex M. Azar II
U.S. Department of Health & Human Services
200 Independence Avenue, SW
Washington, DC 20201

Dear Vice President Pence, Ambassador Birx and Secretary Azar:

The undersigned organizations write with urgency to strongly recommend that the administration immediately reverse its decision to bypass the Centers for Disease Control and Prevention (CDC) in the collection and analysis of COVID-19 patient data. Our organizations represent healthcare providers, public health professionals, researchers and scientists, other healthcare professionals and patient advocates who have been central in responding to the pandemic.

Maintain the integrity of COVID-19 data. The administration’s abrupt decision to establish a new data collection procedure that bypasses the CDC as a recipient of data on patients hospitalized with COVID-19 is alarming and will undermine efforts to control the pandemic at a time when COVID-19 cases and hospitalizations are surging across the country. A core function of the CDC is to collect and report public health data and this important work is led by trained experts with the infrastructure necessary to ensure the validity and accuracy of the data in addition to protecting data from misuse. Placing medical data collection outside of the CDC puts the quality and integrity of the data at risk threatening to seriously undermine our country’s response to COVID-19.

Keep public health data public. COVID-19 data collection and reporting must be done in a transparent manner and must not be politicized, as these data are essential to informing an effective response to the pandemic and to establishing public trust in the response. Data transparency is particularly critical in the midst of an unprecedented national health crisis that is disproportionately impacting certain segments of the U.S. population, including Black/African American, Latinx and Native American communities. Widely accessed COVID-19 tracking sites have already lost access to ICU hospitalization data - a key indicator for monitoring the state of the pandemic.

Invest in CDC data reporting. Rather than investing in a new data collection mechanism and reporting infrastructure, we strongly urge the administration to provide funding to enhance data collection and strengthen the role of CDC to collect and report COVID-19 data by race and ethnicity, hospital and ICU capacity, total number of tests and percent positive, hospitalizations and deaths. This critical function belongs with our nation’s top public health agency.

Data is critical to the state and local response. The availability of accurate hospital data, coupled with other public health indicators, is essential for the state and local response. Jurisdictions need situational awareness about bed availability, shortages of supplies and personal protective equipment, and other healthcare needs in order to coordinate the response. Creating duplicate, siloed data reporting systems may make it harder for jurisdictions to get an accurate picture of the pandemic and limit visibility across neighboring states and localities.

Reliable, comprehensive and timely data are essential to monitor and evaluate the state of the pandemic and to inform an effective response, including the distribution of essential supplies and treatment. We urge you not to advance the new data collection plan any further and instead consult with the public health and healthcare communities to discuss effective strategies for ensuring the availability of the data we all need and want to bring the pandemic under control in the U.S.


See list of signatories