When President Donald Trump started touting hydroxychloroquine as "one of the biggest game changers” for treating COVID-19, researchers hoped electronic health records could quickly tell them if he was on the right track.
Yet pooling data from the digital records systems in thousands of hospitals has proved a technical nightmare thus far. That's largely because software built by rival technology firms often cannot retrieve and share information to help doctors judge which coronavirus treatments are helping patients recover.
"I'm stunned at EHR vendors' inability to consistently pull data from their systems," said Dale Sanders, chief technology officer of Health Catalyst, a medical data analytics company. "It's absolutely hampering our ability to understand and react to COVID."
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.
EHRs document every step doctors or other health care workers take in treating a COVID patient, from medicines prescribed to signs of progress or setbacks. Data collected from large numbers of patients could quickly yield answers about which treatments are succeeding.
But the pandemic is bringing into stark relief just how far the nation is from achieving the promised benefits, critics say.
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."
Sanders, whose firm is a member of the COVID-19 Healthcare Coalition, a business-sponsored group promoting coronavirus data-sharing and analysis, said federal health officials lost precious time by failing to address this need as early as mid-January.
He said the federal Centers for Disease Control and Prevention, or CDC, should have devised a COVID data-collection plan using standardized terminology so hospitals with incompatible EHRs could compare notes on the fast-paced pandemic.
The CDC did not 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 data from about two dozen health systems and is expecting 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.
Anderson said the coalition is "getting close" to being able to share some results from reports of treating people with convalescent plasma recovered from patients who have survived COVID-19. The group is also examining treatment data on the drug remdesivir as it irons out some of the technical difficulties that complicated its analysis of hydroxychloroquine. Last week, the Food and Drug Administration warned that hydroxychloroquine could cause heart problems and should be used only in a hospital or clinical trial.
There are other signs the EHR industry is relaxing its grip on medical data in response to the emergency. Major EHR vendor Cerner Corp. has offered researchers access to some types of COVID-19 data, including "clinical complications and outcomes that could help drive important medical decisions."
And some health systems have begun publishing data drawn from EHRs. One study released this month, for instance, tracked the outcome of 5,700 coronavirus patients treated at 12 hospitals in a New York City health system and found that 88% of patients placed on ventilators had died. All the hospitals shared the same records vendor.
"In 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.
Limits in electronic data collection systems also are hindering COVID-19 public health and surveillance efforts.
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.
Certain CDC forms, such as Person Under Investigation COVID case reports, can take up to 30 minutes to complete. Other forms exchanged between hospitals and laboratories often are missing critical information, leading to delays in contacting patients and identifying people they had close contact with. In some states, demographic information on race and ethnicity is missing 85% of the time, and patients’ addresses, half the time, according to Janet Hamilton, executive director of the Council of State and Territorial Epidemiologists.
"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."
The government's health IT chief says a new administrative rule to promote interoperability and bar EHR manufacturers from impeding the flow of information will take time to change behavior.
"If this were to have happened three or four years in the future when we have interoperability … we would be in a much better spot here. But unfortunately, that’s not quite the case, but we’re still keeping our work going," Donald Rucker, national coordinator for health information technology, said during an April 15 virtual meeting.
This article was reprinted from khn.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.