KFF Health News
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Joel Wakefield is not just an armchair epidemiologist. His interest in tracking the spread of covid is personal.
The 58-year-old attorney who lives in Phoenix has an immunodeficiency disease that increases your risk of serious results of covid-19 and other infections. He has spent a lot of time since 2020 checking state, federal and private sector covid trackers for data to inform his daily decisions.
“I am evaluating ‘When am I going to see my grandchildren? When am I going to let my own children into my house? ” he said.
Many Americans have made it through the pandemic, but for the millions who are immunocompromised either otherwise more vulnerable to covidreliable data is still important to assess safety.
“I don’t have that luxury of a complete shrug,” Wakefield said.
The federal government public health emergency that has been in effect since January 2020 expires May 11. The emergency declaration enabled sweeping changes to the US health care system, including requiring state and local health departments, hospitals, and commercial laboratories to regularly share data with federal officials.
But some data-sharing requirements will come to an end and the federal government will lose access to key metrics, as a skeptical Congress seems unlikely to give agencies additional powers. And private projects, like those of The New York Times and Johns Hopkins Universitythat made covid data understandable and useful to everyday people, stopped collecting data in march.
Public health legal scholars, data experts, former and current federal officials, and patients at high risk of serious covid outcomes fear that reduced access to data could make covid control more difficult.
There have been improvements in recent years, such as large investments in public health infrastructure and updated data reporting requirements in some states. But concerns remain that the overall chaotic state of the US public health data infrastructure could hinder response to any future threats.
“We are all less safe when there is not national collection of this information in a timely and consistent manner,” said Anne Schuchat, former principal deputy director of the Centers for Disease Control and Prevention.
The lack of data in the early days of the pandemic left federal officials like Schuchat with an unclear picture of the rapid spread of the coronavirus. And even as the public health emergency opened the door for data sharing, the CDC worked for months to expand your authority.
Finally, more than a year after the pandemic, the CDC gained access to data from private health care settings, such as hospitals and nursing homes, commercial laboratories, and state and local health departments.
CDC officials have been working to retain their authority over certain information, such as immunization records, the director said. Rochelle Walensky.
Walensky told the US House. in February that expanding the CDC’s ability to collect public health data is critical to its ability to respond to threats.
“The public expects us to jump on things before they become public health emergencies,” he later told KFF Health News. “We can’t do that if we don’t have access to the data.”
The agency is negotiating information-sharing agreements with dozens of state and local governments, Walensky said, as well as partnering with the Centers for Medicare & Medicaid Services. Is also doing lobbying for the legal power to access the data of the public and private parts of the health system. The hospital data reporting requirement was disassociated from the health emergency and will expire next year.
But it is an uphill battle.
“We may not have some of those data points anymore,” Walensky said, noting how access to covid test results from labs will disappear. That data became a less accurate indicator as people turned to home testing.
In the future, Walensky said, the CDC’s Covid tracking will resemble his seasonal flu surveillance, which uses information from sample sites to establish overall trends. It will offer a less granular view of how Covid is spreading, which experts worry could make it more difficult to detect worrisome new viral variants early.
In general, federal courts, including the US Supreme Court, have not supported the expansion of public health powers in recent years. Some handed down sentences for block mask commandspause mandatory covid vaccination requirements and end the nationwide eviction moratorium.
Such power limits leave the CDC with its “totally dysfunctional and outdated” data collection system, he said. Lorenzo Gostin, director of the O’Neill Institute for National and Global Health Law at Georgetown University. It’s like a “mosaic,” he said, in which states and territories collect data in their own way and decide how much to share with federal officials.
Although covid numbers are on a downward trend, the CDC still counts thousands of new infections and hundreds of new deaths every week. More than 1,000 Americans are also hospitalized daily with complications from covid.
“When we stop looking, everything becomes more invisible,” Gostin said. “Covid knowledge and awareness is going to fade into the background.”
State and local public health officials are generally willing to share data with federal agencies, but often run into legal obstacles that prevent them from doing so, said Marcus Plescia, chief medical officer for the Association of State and Territorial Health Officials.
It will take a lot of work to loosen state restrictions on public health data. And the political will may be lacking, considering that many jurisdictions have reversed public health powers in recent years. Until the rules change, the CDC’s power to help states is limited, Plescia said.
“They have their hands a little bit tied as to what they can do,” he said.
Public health officials rely on data to guide interventions and track how well they are working. Lack of information can create blind spots that exacerbate poor outcomes for high-risk populations, he said. Denise ChryslerSenior Advisor to the Network for Public Health Law.
“If you don’t have the data, you can’t track down who you’re not serving. They are going to fall between the cracks,” she said.
The lack of covid data broken down by race and ethnicity in the early days of the pandemic obscured the enormous impact covid had on marginalized groups such as blacks and Hispanics, Chrysler said. Some states, such as New Jersey and Arizona, issued rules to require the collection of race and ethnicity data for COVID, but they were temporary and tied to state emergency declarations, he said.
The inconsistency of local data precipitated the end of privately managed projects that complemented government resources.
The available data that the researchers were able to extract “was just terrible,” he said. beth blauer, associate vice chancellor for public sector innovation at Johns Hopkins, who helped launch his dashboard. The decision to end the program was a practical one.
“We relied on publicly available data sources, and the quality had eroded rapidly in the past year,” he said.
The rapid collapse of the data network also raises questions about long-term investments by state and local agencies to track covid and other threats.
“I wish we had a data set that would help guide personal decision making,” Blauer said. “Because I’m still afraid of a pandemic that we really don’t know much about.”
For Schuchat, formerly a member of the CDC, there is a lot of ground to make up after years of underinvestment in public healthlong before the covid pandemic, and a lot at stake to ensure good data systems.
The CDC’s detection of a lung disease related to vaping in 2019 it was recognized after case reports from a hospital in Wisconsin, he said. And he blamed the nation’s slow reaction to the opioid crisis on poor access to emergency room data showing a worrying trend in overdoses.
“We are much better off when we detect things before there is an emergency,” Schuchat said. “We can prevent big emergencies from happening.”
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