Over the past decade, federal officials have spent some $36 billion switching from paper to electronic health records, or EHRs, expecting, among other things, to harness volumes of medical data to reveal which treatments work best.
Dr. Richard Cook, a research scientist, and health care safety specialist, traces the data problems to missteps dating to the rollout of EHR, which began in earnest in 2009 and has been controversial ever since because commercial players produced—and hospitals bought—systems that have proved more suited to billing than public health.
“This was a boondoggle from the get-go, and the promoters knew it at the time,” Cook said.
Although some health systems are beginning to draw on EHR data to spot coronavirus trends and beneficial treatments, most health organizations around the country cannot readily do so.
“If we had a national database, we’d get a readout quickly about responses to [COVID-19] treatments,” said Dr. Eric Topol, director of the Scripps Research Translational Institute.
Medical researchers favor studies that test the efficacy of a drug in a formal clinical trial, and trials are underway for a variety of possible COVID-fighting medicines, including hydroxychloroquine. The results could take months or more, however, and doctors treating critically ill patients have few options in the meantime.
Topol said “real-world” evidence drawn from computerized records of COVID patients, while not as reliable as a clinical trial, is “still very useful” to help guide medical decisions.
Medical data has been hard to tease out because much of it resides in electronic “silos,” which government officials have not required technology companies to open up and eliminate.
“We’ll see piecemeal readouts of small numbers from individual health systems,” Topol said, but “don’t have the important data that we need.”
He said the federal Centers for Disease Control and Prevention, or CDC, should have devised a COVID-19 data-collection plan using standardized terminology so hospitals with incompatible EHRs could compare notes on the fast-paced pandemic.
The CDC didn’t respond to written requests seeking comment. A spokesman for the Health and Human Services office that coordinates health information technology policy said: “This is a novel disease so the health care system did not know what data we needed to collect—we are learning that the system needs to build out reporting information on multiple clinical features.”
Still, several of the top EHR manufacturers have joined the data-sharing coalition, which is pledging to at least partially fill the information void. The group has access to COVID-19 data from about two dozen health systems and expects to add more.
“This is the first attempt at this that I’m aware of where inherently competitive EHR vendors have come together to work together with clinical researchers,” said Dr. Brian Anderson, chief digital health physician with the MITRE Corp., a nonprofit technology group that formed the coalition in late March.
“In a crisis, people seek data, and authorities demand it,” said Cook, the health care safety specialist. But, he said, “it is not possible to build such a system on demand.”
Ross Koppel, a professor at the University of Pennsylvania and longtime EHR safety expert, said that the COVID-19 pandemic illustrates both “strengths and disappointments” of the digital systems.
While health systems using a single vendor have been able to pool data, Koppel said, the industry has battled regulators seeking to adopt common standards, a practice known as interoperability.
“That failure to mine these oceans of invaluable data reflects the power of the vendors to prevent government requirements for data standards and interoperability,” he said.
Officials said they are sometimes required to manually fill out and fax some forms, wasting valuable time. Some information must be printed out from EHRs and reentered by public health authorities because it cannot be sent electronically.
“We’re using yesterday’s technology for the biggest public health emergency in our lifetimes,” Hamilton said. “COVID has demonstrated for people what we’ve known all along. You can’t leave public health at the end of the line.”
