The Morning Journal (Lorain, OH)
Data dysfunction
CDC official compares public health tech to being on ‘data superhighway in our Model T Ford’
On April 1, a researcher at the Centers for Disease Control and Prevention emailed Nevada public health counterparts for lab reports on two travelers who had tested positive for the coronavirus. She asked Nevada to send those records via a secure network or a “password protected encrypted file” to protect the travelers’ privacy.
The Nevada response: Can we just fax them over?
You’d hardly know the U.S. invented the internet by the way its public health workers are collecting vital pandemic data. While health-care industry record-keeping is now mostly electronic, cash-strapped state and local health departments still rely heavily on faxes, email and spreadsheets to gather infectious disease data and share it with federal authorities.
This data dysfunction is hamstringing the nation’s coronavirus response by, among other things, slowing the tracing of people potentially exposed to the virus. In response, the Trump administration set up a parallel reporting system run by the Silicon Valley datawrangling firm Palantir.
Emails exchanged between the CDC and Nevada officials in March and April, obtained by The Associated Press in a public records request, illustrate the problem. It sometimes takes days to track down such basic information as patient addresses and phone numbers. One disease detective consults Google to fill a gap. Data vital to case investigations such as patient travel and medical histories is missing.
None of this is news to the CDC or other health experts. “We are woefully behind,” the CDC’s No. 2 official, Anne Schuchat, wrote in a September report on public health data technology. She likened the state of U.S. public health technology to “puttering along the data superhighway in our Model T Ford.”
Holes in the data
This information technology gap might seem puzzling given that most hospitals and health care providers have long since ditched paper files for electronic health records. Inside the industry, they’re easily shared, often automatically.
But data collection for infectious-disease reports is another story, particularly in comparison to other industrialized nations. Countries like Germany, Britain and South Korea — and U.S. states such as New York and Colorado — are able to populate online dashboards far richer in real-time data and analysis. In Germany, a map populated with public data gathered by an emergency-care doctors’ association even shows hospital bed availability.
Many hospitals and doctors are often failing to report detailed clinical data on coronavirus cases, largely because it would have to be manually extracted from electronic records, then sent by fax or email, said Johns Hopkins epidemiologist Jennifer Nuzzo.
It’s not unusual for public health workers to have to track patients down on social media, use the phone book or scavenge through other public-health databases that may have that information, said Rachelle Boulton, the Utah health department official responsible for epidemiological reporting. Even when hospitals and labs report that information electronically, it’s often incomplete.
Reinventing the wheel
The White House asked Palantir, whose founder Peter Thiel is a major backer of President Donald Trump, to hastily build out a data collection platform called HHS Protect. It has not gone well.
On March 29, Vice President Mike Pence, who chairs the task force, sent a letter asking 4,700 hospitals to collect daily numbers on virus test results, patient loads and hospital bed and intensive care-unit capacity. That information, the letter said, should be compiled into spreadsheets and emailed to the Federal Emergency Management Agency, which would feed it into the $25 million Palantir system.
On April 10, Health and Human Services Secretary Alex Azar added more reporting requirements.
Those mandates sparked a backlash among stressed hospitals already reporting data to state and local health departments. Producing additional cumbersome spreadsheets for the federal government “is just not sustainable,” said Janet Hamilton, of the Council of State and Territorial Epidemiologists.
Fixing the problem
Farzad Mostashari, who a decade ago oversaw the federal effort to modernize paper-based medical records, said it would be far more efficient to fix existing public-health data systems than to create a parallel system like HHS Protect.
“We have a lot of the pieces in place,” Mostashari said. A public-private partnership called digitalbridge.us is central to that effort.
Going forward, the CDC is evaluating how to spend $500 million from March’s huge pandemic relief package to upgrade health care information technology.
Public-health officers are still doing things the hard way. Up to half the lab reports submitted for public health case investigations lack patient addresses or ZIP codes, according to a May 1 Duke University white paper co-authored by Mostashari.
“We’re losing days trying to go back and collect that information,” said Hamilton of the epidemiologists’ council. “And then we’re reaching out to hospitals or physicians’ offices that, quite frankly, are saying ‘I’m too busy to tell you that.’”