After a middle-aged woman tested positive for Covid-19 in January, public health workers sought answers to questions vital to understanding how the virus was spreading in Alaska.
They found out that the woman had underlying conditions and hadn't been vaccinations. She had been hospitalized. Many states collect that kind of information about people who test positive for a disease. The goal is to show a detailed picture of how one of the worst diseases in American history has evolved and continues to kill hundreds of people every day.
Most of the information about the Fairbanks woman is lost to state and federal epidemiologists. Efforts to understand the Pandemic have been crippled by decades of under investment in public health information systems. It will take a long time to fix the data failure, a lesson of the Pandemic that has killed more than one million Americans.
It's not possible to quantify the cost of illness and death. The United States has the highest Covid death rate among wealthy nations due to the nation's low vaccination rate. The lack of timely data has exacted a heavy toll.
The White House is trying to control the Pandemic. It has made it more difficult to respond quickly.
The details of the woman's case were scattered among multiple state databases, none of which connected easily to the others, much less to the Centers for Disease Control and Prevention. Nine months after she fell ill, her information was useless to epidemiologists because they were not able to combine it with data on other Alaskans and Americans who have gotten Covid.
The response to the monkeypox outbreak is being hampered by old data systems. State and federal officials are losing time trying to get information from a digital pipe.
Rochelle P. Walensky, the C.D.C. director, said in an interview that they can't be in a position where they have to do everything. We will always be late if we have an outbreak.
In Alaska, Covid case reports are typically handled by the local health department.
The basic case count from test results is not enough to track the Pandemic.
The state has immunizations.
There is a registry.
There are details from that.
Interviews with people.
With patients.
Vital records of the state.
There are databases.
There is a documentary about democratization.
There are deaths and deaths.
There is data.
With high volume, missing information and systems that prevent data sharing, records are mostly incomplete.
The health department of the state.
There is a case database.
Sex and county of residence are usually sent to the C.D.C.
Efforts to see the national picture are hampered by the differing data the C.D.C. receives.
Over the past decade, the federal government has spent a lot of money on modernizing the data systems of private hospitals and health care providers. Doctors and health care systems have been able to share information more quickly.
State and local health departments were left with the same fax machines, spreadsheets, emails and phone calls while the private sector modernized its data operations.
The Council of State and Territorial Epidemiologists estimates that states and localities need $7.84 billion for data modernization over the next five years. The healthcare information and management systems society estimates that the agencies need $37 billion over the next ten years.
The consequences of neglect have been brought to light by the Pandemic. Israel and Britain have national health systems that give timely answers to questions such as who is being hospitalized with Covid and how well vaccines work. American health officials have had to rely on extrapolations and educated guesses based on amish of data.
Federal officials needed to know if Omicron was more deadly than the Delta variant that preceded it, and if hospitals would soon be flooded with patients. They didn't get the answer from testing, hospitalization or death data.
The C.D.C. asked Kaiser Permanente to analyze its Covid patients. Patients hospitalized with Omicron were less likely to be hospitalized, need intensive care or die than those with Delta.
The agency only got a snapshot by using a private system. There is a path. "Dr. Walensky?"
Regulators have been left high and dry due to the lack of reliable data when it comes to authorizing additional shots of coronaviruses vaccine. The vaccine's performance against new versions of the virus is what determines the decision. Knowing when and how many people are getting vaccine-related infections is important.
After the first Covid shots were administered, there was no national data on breakthrough cases. Due to privacy concerns, many states and localities strip out names and other identifying information from much of the data they share with the C.D.C, making it impossible for the agency to figure out whether any given Covid patient was vaccine free.
The data from the C.D.C. is useless for determining vaccine efficacy. Regulators had to marry reports from regional hospital systems with data from other countries in order to make sure the picture was accurate.
Even vaccine experts were confused by the studies and public doubts about the government's decisions. Some experts blame squishy data for the disappointing booster dose take.
The F.D.A. spends tens of millions of dollars each year for access to Covid-related health care data from private companies. The unvaccinated are more likely to die of Covid than those who got shots.
State data does not reflect prior infections, an important factor in assessing vaccine effectiveness.
It took a long time for this to happen. We started working on this in April of 2020.
As the government rolls out reformulated booster shots, the need for up-to-date data is even more important. The current version of the virus is being targeted by the new boosters. Evidence from human clinical trials will be delivered by pharmaceutical companies.
How will we know if that is the reality? "Dr. Jha, what do you think?" Clinical data that includes past infections, history of shots and brand of vaccine is absolutely essential for policymaking.
It's going to be very difficult to get.
The first monkeypox case in the United States was confirmed on May 18. Federal authorities can't generally demand public health data from states. It's difficult to organize a federal response to a new disease that has now spread to nearly 24,000 people.
The impact of the disease on black and Hispanic men was clouded by the fact that more than half of the people reported to have been infections were not identified by race.
It was necessary for the C.D.C. to negotiate data-sharing agreements with individual states to find out how many people were getting the monkeypox vaccine. The information was important to assess whether the taxpayer-funded doses were going to the right places.
Health officials said that the declaration of the monkeypox outbreak as a national emergency made it easier to share information. The C.D.C.'s vaccine data is based on 38 states.
The C.D.C.'s grants help keep state and local health departments afloat, so it could compensate for its lack of legal clout. If departments don't cooperate with the agency, public health could be harmed.
The lack of scientists and information analysts at state and local health departments is the biggest impediment to getting timely data.
Alaska is one of the best examples.
Many of the state's Covid case reports were sent via fax on the fifth floor of the state health department's office. National Guard members were called in to help with data entry.
The health department's specialists didn't have the capacity to be the epidemiologists that we needed them to be because all they could do was enter data
She said the data was too patchy to guide decisions.
Dr. Zink asked her team if racial and ethnic minorities were being tested less often than whites.
According to Megan Tompkins, a data scientist and epidemiologist who used to manage the state's Covid data operation, the person's race and ethnicity weren't identified for 60 percent of the people tested.
After mass testing sites were closed, Ms. Tompkins' team was trying to manually update tens of thousands of old case reports in the state's disease database. The racial breakdown is thought to be useful by state officials.
Ms. Tompkins said that they had begun from broken systems. We lost a lot of the data and the ability to do anything with it.
State and local public health agencies have lost an estimated 15 percent of their staff between 2008 and 2019. 3 percent of the $3.8 trillion spent on health care in the US was spent on public health.
Congress loosened its purse strings due to the Pandemic. The budget for data modernization at the C.D.C. was doubled for the current fiscal year and is expected to double again next year. An additional $1 billion was provided by two relief bills.
Public health funding has a boom and bust pattern. The appetite for public health spending has waned.
The cost of moving a single major hospital system to electronic health records is about the same as the $1 billion for data modernization.
For the first two years of the Pandemic, the C.D.C.'s disease surveillance database was supposed to track not just every confirmed Covid infection, but whether the person had recently traveled, had an underlying medical condition, or had been hospitalized. There were 86 million cases reported by the health departments.
An analysis by The New York Times found that a lot of data fields are blank. Race and ethnicity are not included in one-third of the cases. The patient's sex, age group and location are recorded.
Each type of data is contained in the C.D.C. coronaviruses case data share.
The C.D.C. says the basic demographic data is useful, but swamped health departments weren't able to give more. The agency recommended that they stop focusing on high-risk groups and settings.
Other sources of data have been patched together by the C.D.C. About 70% of the nation's emergency departments and urgent care centers are tracked by a second database. It's a sign of rising infections. Many departments in California, Minnesota, Oklahoma and other states don't participate.
How many hospital patients have Covid is tracked by another database. The totals include patients admitted for reasons other than Covid, but who tested positive for drugs. The C.D.C. uses hospital numbers for its assessment of the threat from the virus.
There are bright colors. Wastewater monitoring is a new tool that helps spot incipient coronaviruses. If a new version of the virus has begun to circulate, the government will test the viral samples.
Under the weight of the Pandemic, officials hope to use electronic health records to update the disease monitoring system. If a doctor diagnoses a disease that is supposed to be flagged to public health authorities, the patient's electronic health record would generate a case report.
The federal government requires hospitals and clinicians to show progress towards automated case reports by the end of the year or face financial penalties. Only 15 percent of the 5,300 hospitals certified by the Centers for Medicare and Medicaid Services have generated electronic case reports.
Private sector case reports are only a small part of the solution. Public health departments will not be able to process the reports that hospitals and providers will be required to send unless they are modernized.
Micky Tripathi is the national coordinator for health information technology at the Department of Health and Human Services.
The effort to document the Covid case shows how far away health departments are.
The woman's workplace transferred her saliva to the state lab. Workers entered basic information into an electronic lab report and searched a state database for the woman's address and phone number.
The state lab forwarded her case report to the state health department, where the same information had to be retyped into a database. A worker manually updated her file after logging in and clicking through multiple screens to learn that she hadn't been vaccine free.
The woman's case was added to a spreadsheet with more than 1,500 other cases. That was forwarded to a different team of contact tracers, who gathered other important details about the woman by phone, and then plugged them into another database.
Because the contact tracers' database is incompatible with the epidemiologists' database, their information could not be easily shared between the state and federal levels.
When the contact tracers found out that the woman had been hospitalized with Covid, they had to inform the epidemiology section by email.
Ms. Tompkins said that Alaska's problem was not so much that it was short of information, but that it was not able to combine it into usable form. The disease monitoring system did not work in Alaska, and we need to start rethinking it from the beginning.
Alaska received a grant from the C.D.C. When a second five-year public health grant for personnel and infrastructure was awarded this summer, state officials expected more.
They wanted to hire a data modernization director to increase their work force.
After the grant was announced, Carrie Paykoc sent a text to Dr. Zink.
The award included $213,000 for data modernization. She said it was pretty dire.
Ms Paykoc said they were hoping for funding. It was a camper van.
Kitty Bennett is a researcher.
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