Why has it been so hard to get a COVID-19 vaccination? One reason may be the software that almost all medical records in the U.S. are built on.
It makes up the systems nurses and doctors type patients' vital signs and prescriptions into — whether they're getting a routine physical or going to the emergency room with a broken arm.
And it's the same type of program used to log patient data when COVID-19 shots are given. But those electronic health records often aren't connected and don't share information easily.
That's making it difficult to line up a vaccine appointment, keep track of side effects and make sure vaccines are being distributed equitably and efficiently, says Dr. Bob Kocher, who advised the state of California on COVID-19 testing.
"Electronic health records are the tools that doctors use to take notes on patient care, to share information with other doctors, to track your lab results, to order prescriptions," he says. "They're really the workflow software that health care providers use."
But this sharing is "not done very often and it's only done really when a patient requests for it to happen," says Kocher, who helped shape the Affordable Care Act under the Obama administration. He's also a partner at the venture capital firm Venrock.
Disconnected systems require patients to formally request that their medical information be sent from one doctor's office to another. And even then, Kocher says, "that information doesn't flow" to all of a patient's caregivers.
"In reality, hospitals are a lot more like banks or retail stores," he says. "They don't want to share information because they're worried that patients might actually go to another location and get their care."
There are over 1,000 different electronic health record systems in the U.S., and almost every hospital and clinic has a slightly different system tailored to its own needs, Kocher says.
As states scramble to get millions of doses of the coronavirus vaccines into people's arms, disconnected records systems are getting in the way.
Many vaccine distribution sites use their own electronic systems for scheduling, making it difficult for people to find and sign up for vaccine appointments efficiently.
If the facility where you got your first dose has gotten too busy, the systems can make it tough to set up a second appointment at a different place. "There's no way today to share across the systems easily that you got your first shot of a vaccine in one location, then got the second one at another location," Kocher says.
Those electronic systems are also hampering scientists trying to collect important data about the vaccines.
"We don't know how long protection lasts from the vaccines," Kocher says. The Food and Drug Administration is trying to collect information about adverse reactions or subsequent COVID-19 infections via a separate portal, but some practitioners aren't using it.
Without a central data management system, Kocher says, scientists will be left in the dark about what might be happening if even a small percentage of vaccinated people become infected with COVID-19. He says important questions will be difficult to answer: "Did the vaccine wear off? Was it a different strain? And did they have any side effects?"
Many states and counties desperately want data on the race and ethnicity of people who've been vaccinated to make sure the limited supply is reaching hard-hit communities equitably. But not all electronic health systems collect race and ethnicity data on patients.
Kocher says adding new features to software to improve the vaccination rollout wouldn't be easy.
"Electronic health records are much like old-fashioned software that exist on your local computer," he says. "They're not in the cloud. ... You actually have to go to each different health care location and open up the back door where the server is and install it manually."
The issues with electronic health records aren't new. Kocher says the team working on the Affordable Care Act didn't go far enough to fix the problem.
"We created standards for data sharing so that you can securely share information across the records," he says. "The challenge has been that the doctors and hospitals who use them haven't had great reasons to turn on those features." Sharing isn't done routinely, in part for privacy and security reasons.
Kocher hopes that the problems electronic records are posing for the delivery of COVID-19 vaccines might finally lead to better data sharing across the health care system, to help patients.
"I think that we're going to see the CDC make really compelling arguments that we have to get better at at least sharing important elements of the electronic health record," he says. "So maybe not everything, but it's going to be critical for our national security and safety to know: how long are these vaccines providing protection, when are people starting to get COVID again, are there adverse events?"
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