On April 1, a researcher from the United States Centers for Disease Control and Prevention (CDC) emailed her Nevada public health counterparts to request laboratory reports from two tourists who they had tested positive for coronavirus. He asked Nevada to send such records over a secure network or in an “encrypted and password protected file” to protect the identity of the patients.
Nevada’s response was: Can’t we fax them?
It would be hard to tell that the United States invented the internet because of the way its public health workers are gathering critical pandemic data. Despite the fact that the healthcare industry currently primarily uses electronic means to keep their records, tight budgeted local and state health departments still rely heavily on faxes, emails, and spreadsheets to collect and share infectious disease information. federal authorities.
RELATED
This dysfunction is hindering the country’s response to the spread of the coronavirus, among other things, by slowing down the tracking of people who may have been exposed to the virus. In response, the government of President Donald Trump installed a parallel reporting system managed by Palantir, a Silicon Valley data management company. By duplicating many of the data requests, additional pressure has been placed on workers fighting the disease in hospitals, laboratories, and other health centers who already have to report case data and analysis to public health agencies.
So far there is little evidence that the Palantir system has significantly improved the federal or state response to COVID-19.
The email exchanges between CDC and Nevada authorities between March and early April, which the Associated Press had access to through a public records request, highlights the extent of the problem. Sometimes it takes several days to find information as basic as a patient’s address or phone number. A researcher consults on Google to fill in the gaps. There is no vital data available for case investigation, such as a patient’s medical or travel history.
None of this is new to the CDC or other health experts.
“We are extremely behind,” said Anne Schuchat, the second-highest ranking official within the CDC, in a report last September on public health data technology. He compared the state of America’s health technology to “driving the information superhighway in our Ford Model T”.
Data gaps
This technology gap may seem puzzling considering that most hospitals and other healthcare providers have long discarded paper records to replace them with electronic records. They are easily shared within the industry, often automatically.
But collecting data for infectious disease reporting is a completely different story, particularly compared to other industrialized nations. Countries like Germany, Great Britain, and South Korea – and states like New York or Colorado – are able to fill electronic dashboards in real time with much more information and analysis. In Germany, a map with public data collected by an association of emergency physicians is even capable of showing the availability of hospital beds.
In the United States, many hospitals and doctors generally cannot report detailed clinical data on coronavirus cases, largely because they would have to be manually extracted from electronic records and subsequently sent via fax or email, said Jennifer Nuzzo, an epidemiologist. Johns Hopkins.
It’s not uncommon for public health employees to have to track patients through social media, the phone directory, or other public health databases that may have such information, said Rachelle Boulton, the Utah department of health official responsible for of epidemiological reports. Even when hospitals or laboratories report such information electronically, it is generally incomplete.
The deficiencies in CDC collection have been particularly evident.
In 75% of COVID-19 cases collected in April, there is no data on the patient’s race or ethnicity. A report on children affected by the virus only had symptom data in 9% of the laboratory-confirmed cases whose ages were known. A study of health workers diagnosed with the virus cannot carry out a count because only the corresponding boxes were filled in 16% of the forms received. In another study, the CDC had data on pre-existing conditions – risk factors such as diabetes or heart or respiratory disease – in only 6% of reported cases.
The CDC indicators released daily do not have data on hospitalizations nationwide in the last 24 hours and the numbers of ordered and performed diagnostic tests, fundamental information in the federal response, said Dr. Ashish Jha, director of the Harvard Institute of Global Health.
“Throughout the epidemic CDC has been two steps behind the disease,” said Jha.
Reinventing the wheel
Rather than speeding up existing measures to modernize disease reporting in the United States, the White House asked Palantir, whose founder Peter Thiel is a big supporter of Trump, to hastily build a data collection platform named HHS Protect. It did not go well.
On March 29, Vice President Mike Pence, who heads the pandemic task force, sent a letter requesting 4,700 hospitals to collect daily figures on the results of diagnostic tests for the virus, patient load, and hospital beds, and capacity in intensive care units. Such information, the letter stated, was to be compiled into data sheets and sent via email to the Federal Emergency Management Agency, which would be responsible for feeding the data into the $ 25 million Palantir system.
On April 10, Health and Human Services Secretary Alez Azar added more requirements to hospital reports.
Those requests drew criticism from overwhelmed hospitals that were already reporting data to state and local health departments. Generating additional data sheets for the federal government “is simply not sustainable,” said Janet Hamilton, executive director of the Council of State and Territorial Epidemiologists.
The HHS Protect system now has more than 200 fact sheets, including reports from about 75% of the nearly 8,000 hospitals in the United States, according to Katie McKeogh, a press officer for the Department of Health and Human Services (HHS). ). It also includes industry supply chain data, laboratory test results, and state measurements.
But due to limited government transparency, it is unknown how accurate or useful the HHS Protect has been. Asked for examples of its usefulness, McKeogh only mentioned one: The coordinator of the White House working group, Dr. Deborah Birx, receives a report each night based on the data collected by the system and which provides âan operational vision of the cases at the national level â.
“We will continue to work to improve that operational vision,” McKeogh said when asked about the flaws in HHS data collection. Neither HHS nor CDC provided officials to answer questions about HHS Protect; Palantir refused to formally broach the subject.
Solution to the problem
Farzad Mostashari, who a decade ago was tasked with overseeing federal efforts to modernize paper medical records, said it would be much more efficient to fix flaws in existing public health data systems than to create a parallel system like the HHS Protect. .
“We have many pieces in place,” said Mostashari. A public-private coalition called digitalbridge.us is a fundamental part of that work. In late January, some pilot projects were expanded to automate reporting of infectious disease cases. So far, 252,000 COVID-19 case reports have been generated, CDC spokesman Benjamin N. Haynes said. Congress last December allocated $ 50 million in grants to expand these efforts, which are already in operation in Utah, New York, California, Texas and Michigan.
Going forward, CDC is evaluating how to invest the $ 500 million they raised in the huge pandemic aid package last March to improve their information technology.
Meanwhile, public health officials continue to do things the complicated way. Virtually half of the laboratory reports submitted for public health case investigations lack the address or zip code of the patients, according to a document released May 1 by Duke University and of which Mostashari is one of the co-authors.
“We are wasting days trying to go back to get that information,” said Hamilton of the council of epidemiologists. “And then we get in touch with hospitals or clinics that, quite frankly, reply: ‘I am too busy to give you that information.'”
