This story originally appeared in The New York Times Oct. 23, 2020
https://www.nytimes.com/2020/10/23/opinion/coronavirus-data-secrecy.html

Why Can’t We See All of the Government’s Virus Data?

Since March, federal agencies have been collecting a trove of information. But they refuse to release most of it.

By Christopher J.L. Murray

Dr. Murray is the director of the Institute for Health Metrics and Evaluation and a professor of health metrics sciences at the University of Washington.

Oct. 23, 2020

The Trump administration has declined to release critical data to outside public health experts that would enable them to devise strategies against the virus that has killed 223,000 Americans and counting.

Federal agencies have told us that since March they have been compiling basic data for each county and city on Covid-19 cases, hospitalizations and deaths, the timing of social distancing mandates, testing, and other factors. This information can provide insights into how combinations of public health mandates — masks, social distancing and school closures, for instance — can keep the virus spread in check.

But the government, inexplicably, is not sharing all of its data. Researchers have asked federal officials many times for the missing information, but have been told it won’t be shared outside the government.

In just one example of the pointless suppression of data that pervades the federal response to the coronavirus, The New York Times had to sue the Centers for Disease Control and Prevention under the Freedom of Information Act to obtain basic information on cases tabulated by race and ethnicity. The information showed, as the paper put it, that “Black and Latino people have been disproportionately affected by the coronavirus in a widespread manner that spans the country, throughout hundreds of counties in urban, suburban and rural areas, and across all age groups.”

The institute I run at the University of Washington specializes in making rigorous assessments of health problems around the world and using the data to develop or evaluate strategies to address the challenges. We provide this information to policymakers so that they can make informed decisions. That’s why we are interested in obtaining the data the federal government has on hand on the coronavirus. So are other researchers. But we’ve run into a wall.

That’s not to say the government is keeping all of its data secret. On its website, the Department of Health and Human Services does provide details about daily hospital bed capacity and the percent of beds occupied by patients with Covid-19 at the state level. But it does not provide individual hospital data, nor data by age and sex or on hospital admissions, which are some of the best indicators of the trajectory of the epidemic. Nor does the department provide information on how many hospitals in each state reported their numbers on a given day.

The C.D.C. provides data at the national level for cases by age and sex and race/ethnicity, but not for both together at the state or county levels. We have asked the C.D.C. for such data but have been told by officials that they cannot share it. These breakdowns are essential to make sense of what is happening.

And now, because the government has not allowed outside access to all of its data, key questions are still unanswered nine months after the virus gained a foothold in the United States: Has coronavirus transmission really shifted to younger ages? Adjusting for age and comorbidities, has the death rate among Covid-19 patients improved because of better treatment? Have local mandates influenced the case rate or the hospital admission rate taking these other factors into account, and how?

I don’t know why the government is withholding some of the information it has gathered, when releasing it would so clearly be in the public interest. Perhaps it is driven by a concern that more data will lead to greater scrutiny and criticism over the handling of the pandemic, or misplaced concern that somehow anonymized tabulations of medical information could infringe on individuals’ privacy.

Prior administrations, too, have tended to err on the side of releasing less data than more on public health problems. But the urgency of determining how to manage this pandemic requires a much more open and collaborative approach.

For instance, access to information on which mandates were imposed where and details on the number of cases, hospital admission and subsequent deaths could help us decide whether new lockdowns are needed. Shorter closures, along with mask requirements, restrictions on large group gatherings, shutdowns of bars and limits on indoor dining, may be sufficient until a vaccine is widely available.

We may also discover that given the much greater toll being suffered among Black and Hispanic people, strategies like regular testing of essential workers may also be needed.

But the scientific community needs access to the data to give more precise direction. And precision will matter with the changing of the seasons. It is increasingly clear that Covid-19 acts like pneumonia and the flu, which spread more quickly during the winter.

If our forecasts are anywhere close to accurate, hospitals may be overwhelmed in many places as colder weather descends. Our modeling, updated weekly, currently forecasts more than 17,500 daily deaths globally by Jan. 1, nearly 2,250 of them in the United States.

We may be able to prevent many of these deaths, but we need the complete data to start planning now.

Christopher J.L. Murray is the director of the Institute for Health Metrics and Evaluation and a professor of health metrics sciences at the University of Washington.

A version of this article appears in print on Oct. 24, 2020, Section A, Page 23 of the New York edition with the headline: Why Is Virus Data Kept Secret?