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Call to Action: Speak Up for Transparency in COVID-19 Data

The Trump administration has ordered hospitals to bypass the publicly funded Centers for Disease Control and Prevention (CDC), requiring that, effective immediately, all COVID-19 patient information be sent to a privately operated central database in Washington.

Although advocates such as CDC Director Robert Redfield argue the new process will streamline data, this change does not conform to any standard patterns of data collection and puts this data in private hands. An unprecedented and poorly managed shift in critical data processing adds burdens to overstretched medical establishments, could compromise or lose essential data, and increases the level of chaos in our national response to a rising health crisis.

To combat the coronavirus pandemic, scientists, researchers, public health officials, Congress, and the American public need reliable and pure data in its entirety, without any concerns regarding politicization or censorship. The possibility that the data will be politicized or withheld could cripple public health efforts. Ethical governance requires transparency, common trust in data, and public faith in official communication. Losing this faith and transparency as a global pandemic worsens could directly cost individuals their lives.

To do:

Contact your members of Congress to let them know you are aware of this unusual policy change and are concerned about this irregular shift in data collection, the absence of any redundancy as a new and untested database goes live, the transfer of individual health information into the hands of private companies, and the lack of governmental transparency. Let them know you want them to speak up against a change of platform at this critical moment and demand accessible, reliable data in its entirety with the least amount of influence from political motivations.

In less than five minutes, you can submit a letter to all of your elected representatives at once via our website. You have the option to either write your own letter or answer some short prompts to have a personalized letter created for you. Go HERE to submit a letter.

Background:

The Trump administration has ordered hospitals to send all COVID-19 patient information to a privately operated central database in Washington and to bypass the publicly funded Centers for Disease Control and Prevention.

Experts in public health, data management, and government transparency are worried. There is significant concern that the data will be politicized or withheld from the public. The president has consistently downplayed the number of COVID-19 positive tests and deaths, so any move that makes the data gathering and presentation less transparent is deeply concerning. The president has also frequently criticized both the CDC and the World Health Organization (WHO), with which the CDC was still sharing data. According to Gregory Koblentz, a biodefense expert at George Mason University, “[T]he administration has been trying to silence the CDC. Now it looks like the administration might be trying to blind the CDC as well.” A University of Arizona epidemiologist said, “With so many concerns over the politicization of data right now, this is concerning.”

Advocates such as CDC Director Robert Redfield argue the new process will “streamline data.” They point out shortcomings in the CDC collection of data, which was often delayed in updating information. According to a former administration official, White House coronavirus task force coordinator Deborah Birx “was impatient after months of asking for the system to be improved and insisted they find another solution.” Bringing the data into the Health and Human Services (HHS) database, it is argued, will “streamline data gathering and assist the White House coronavirus task force in allocating scarce supplies like personal protective gear and remdesivir, the first drug shown to be effective against the virus.” HHS chief information officer Jose Arrieta also maintains that the data cannot be easily manipulated and will be available to Congress, the public, journalists, public officials, and health experts.

However, these concerns could easily be resolved by running both systems in tandem for a three- to six-month period; any reasonable transitioning of a process from one platform to another requires the legacy and new platforms to overlap. Instead, the CDC’s dashboard with real-time data was temporarily shut off and will not be updated after July 14. Alternately, instead of an entire platform change, the flaws within the CDC system could be addressed. Indeed, in a bipartisan effort this past April, Sens. Mitt Romney (R-Utah) and Kyrsten Sinema (D-Ariz.) wrote CDC Director Redfield expressing concern that the U.S. data reporting system was “behind the curve” and should be updated to provide real-time national reporting of coronavirus cases. Such improvements should be made within the existing system and still honor the decades-long relationships between hospitals and the CDC.

In terms of human life, the most important concern is probably the disruption and even disaster this change might create in the midst of a global pandemic. Hospitals hard-hit with COVID-19 cases are struggling to keep up, and the frequent changes in reporting requirements are “cumbersome,” “confusing,” and an “administrative hassle.” A spokesman for the Maryland Department of Health, Charles L. Gischlar, said the reporting change “is a heavy lift for hospitals.”

The administration’s unwillingness to follow best practices and respond to the concerns of experts, including those at the CDC, should concern every citizen who might contract this virus. Those reservations are only confirmed given that four former directors of the CDC, who collectively led the organization over a period of more than 15 years, spanning Republican and Democratic administrations alike, have publicly written in an op-ed in The Washington Post:

The CDC is home to thousands of experts who for decades have fought deadly pathogens such as HIV, Zika and Ebola. Despite the inevitable challenges of evolving science and the public’s expectation of certainty, these are the people best positioned to help our country emerge from this crisis as safely as possible. Unfortunately, their sound science is being challenged with partisan potshots, sowing confusion and mistrust at a time when the American people need leadership, expertise and clarity.

Finally, some critics question the “noncompetitive, multimillion-dollar” contract awarded to private contractor TeleTracking for a system that, they say, merely duplicates the existing publicly funded CDC system and removes critical information from civic institutions, placing it instead entirely under the control of a privately held company.

Mormon Women for Ethical Government believes a critical factor in ethical governance is transparency. This abrupt change violates the MWEG Principles of Ethical Government, including:

PEG 1(b): Government officials and institutions should be honest and transparent, insofar as possible without harming national security and individual rights (see D&C 123:13; Alma 37:25).

Whichever data reporting system is used, data must be verifiable and immediately open to Congress, the public, journalists, public officials, health experts, and researchers so that transparency is maintained and America’s health is safeguarded.

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