Wednesday, September 21, 2022

Virus Briefing: America’s data crisis

Major data gaps are undercutting the country's ability to respond to outbreaks.
The New York Times

September 21, 2022

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Covid-19 test results stored by Alaska's health department.Ash Adams for The New York Times

America's data crisis

My colleague Sharon LaFraniere, an investigative reporter, recently told me that throughout the pandemic, she has routinely had government officials struggle to answer very basic questions.

To understand the issue, Sharon traveled to Alaska to watch how public health workers collected and stored information, and how they communicated it to the federal government.

"What struck me right away was how much rote effort there was," Sharon said. "At the peak of the pandemic, they had up to 20 people in a conference room manually entering data from forms into computers. National Guard volunteers and even the department's own highly trained epidemiologists had to help out. It was an amazing waste of time. Case reports were coming in over the fax machine, which would run out of paper every night."

I spoke to Sharon for more on the country's data crisis.

What are the main issues with the way the country manages health data?

I think it's striking how each health department buys its own systems, and they make their individual decisions without any coordination. Many end up with databases that do not connect easily to their other systems, or to the C.D.C. So they can't make the data flow; instead, it's a series of manual hops, skips and jumps through disjointed systems.

How has this affected our ability to respond to Covid?

If you remember right after Thanksgiving, when Omicron appeared, there was kind of a panic. Omicron was clearly much more contagious than Delta, but we didn't know if it was more deadly. Every senior federal health official was anxious to know whether more people were going to die, because they needed to prepare. What would they do if Covid patients flooded hospitals? But they couldn't figure it out from their data because it wasn't specific by variant.

What's another example?

The fact that we could not figure out how many breakthrough infections were occurring really confused the whole booster campaign. We had no national data on breakthrough infections, so regulators were piecing together subsets of data from individual hospital systems. Then they were marrying that with what Israel was saying, because Israel had good national data. And then they threw in Britain, and sometimes other countries.

So why was that a problem?

It was a bewildering patchwork of information. Even the vaccine experts were confused because it was all a big jumble of different studies and different subsets that were stitched together. People were wondering, do we really know what we're doing with these extra shots? It made it very hard for the government to explain to people that enough breakthrough infections were happening that the booster shots were essential.

Data was supposed to inform our decisions about how to fight the pandemic, but to a certain extent, the government was flying blind. I think officials felt they were continually behind the curve. We would get data, but it would be data we needed six months ago. It's pretty disturbing how much data turned out to be useless because it was either incomplete or too late.

How do we fix the problem?

We need to spend money. Public health departments have been starved of funds for years. And the federal government may also need more legal power to compel state and local health departments to deliver data. Now it's mostly a voluntary system.

In the last decade, the federal government has spent $38 billion in incentives so hospitals and clinicians would shift to electronic health records. And ordinary Americans are seeing the benefits of that right now. For many people, if they go in to see their doctor, it's easier for them to look up their health record right then and there.

But the nation did not spend to modernize the public health sector's data operations. When Covid hit, the federal government dedicated more than $1.1 billion to improve those systems. But a billion is about what it cost one major hospital system to shift to electronic health records. So we spent about 38 times as much on the private sector side as the public sector side. That neglect has really hurt us. But that is the pattern for public health funding.

What do you mean?

It rises during a crisis and then it just disappears.

I think it's hard for people to grasp how far public health data is behind because we're very used to the seamless flow of information in our daily lives. We are used to digital services like Instacart, DoorDash, Amazon and entertainment programs that can be streamed to your living room in minutes. But we left public health out in the wilderness with the equivalent of a little rotary telephone and fax machine. Then a crisis arose, and suddenly we wondered, "Hey, where is your data?"

We've had a whole series of infectious disease outbreaks over the last decade, and this isn't going to be the last one. The big fear is that the impetus to try to build public health data systems that work will vanish as soon as Covid cases seem to be truly declining.

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A protest in front of the White House demanding action on chronic fatigue syndrome and long Covid.Zeynep Tufekci/New York Times

The end of the pandemic?

In an interview that aired on CBS's "60 Minutes" on Sunday night, President Biden declared that the pandemic was "over." By Monday morning, the backlash was in full swing.

With 400 to 500 Americans still dying every day of Covid-19, patients said the president was being insensitive at best, and some public health experts said his words were at odds with the science.

"We've had two million cases reported over the last 28 days, and we know underreporting is substantial," said Dr. Michael Osterholm, an infectious-disease specialist at the University of Minnesota. Covid-19, he said, "continues to be the No. 4 cause of death in the country."

Presidential pronouncements carry policy implications, but the Biden administration said that the president's words would not really change anything. The Covid-19 public health emergency remains intact, and much of Biden's domestic agenda is entangled with the coronavirus pandemic as well — including an outstanding White House request that Congress appropriate an additional $22 billion to fight the pandemic.

Biden also doesn't have the power to declare the pandemic over. Experts say that responsibility would land with the World Health Organization, and last week, its director general, Dr. Tedros Adhanom Ghebreyesus, said that "we are not there yet."

"But," he added "the end is in sight."

A Covid test being given in Guiyang, China, this month. On Monday, the city lifted Covid lockdowns in many districts.Yang Wenbin/Xinhua, via Associated Press

'We're on that bus, too'

After a bus accident killed at least 27 people being transferred to a Covid quarantine facility in China on Sunday, many Chinese residents thought: That could be me.

The bus itself became a symbol of their collective "zero Covid" destiny, writes my college Li Yuan in the New New World column: 1.4 billion people heading to an unknown destination. They felt they have lost control of their lives as the government pursues its policy relentlessly, even as the virus has become much milder and much of the world is eager to declare the end of the pandemic.

After the crash, the Chinese public staged a widespread online protest against the government's harsh pandemic policy. "We're on that bus, too" has been one of the most shared comments.

The outpouring of emotion is probably the strongest since the night when a coronavirus whistle-blower, Dr. Li Wenliang, died in February 2020. After nearly three years of constant lockdowns, mass testing and quarantines, people asked how they could give the government the power to deprive them of their dignity, livelihood, mental health and even life; how they could fail to protect their loved ones from the "zero Covid" autocracy; and how long the craziness would last.

What else we're following

Coronavirus

Monkeypox

What you're doing

How are we coping? We barely are. None of us are the same as we were two and a half years ago. There's more anxiety, more silences, and more isolation in our house. I work with toddlers, and anyone who has been around a child knows they're germ magnets. I thought about leaving my field when the pandemic took hold, but it was the choice between stopping doing what I love, or doing what I can to avoid getting sick. It was fine for a while. Everyone had to mask and we were limiting exposure. All of that is gone now and I have had Covid twice this year. I'm tired. The pandemic and the social response to it have taken something from me I don't think I will ever get back.

Sam Kellum, New Jersey

Let us know how you're coping with the pandemic or other outbreaks. Send us a response here, and we may feature it in an upcoming newsletter.

Thanks for reading. I'll be back Friday — Jonathan
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