The surge in coronavirus testing was supposed to give public health officials a better grip on who’s sick and where.
Instead, it’s exposing gaps in reporting, raising concern about whether complete results and basic information about patients that test positive is getting through to officials and health workers trying to contain the pandemic.
A hodgepodge of federal and state mandates on big commercial labs like Quest Diagnostics and others running tests have created reporting holes, even as about 100,000 are processed daily. Public health officials lack contact information of some who test positive. Primary care physicians don’t always get their patients’ results. And big lab companies are withholding results from digital patient data vaults that health providers and officials tap to coordinate care.
“Getting incomplete information is an ongoing problem we face, made more difficult by the exponential volume of results we’re dealing with in the COVID-19 response,” said Kristen Maki, a spokesperson for the Washington state health department.
The concern is being felt in states with mounting caseloads like Colorado, where Gov. Jared Polis is weighing an executive order to force commercial testing labs to send more data to his state’s health information exchange.
HHS on Thursday eased some requirements for sharing data with public health authorities, by allowing businesses that hold patient information for hospitals and other providers to share it with states and localities without the providers’ explicit permission.
But officials and health workers say they’re still spending too much time getting information instead of putting it to use. In Washington state, health department staff are having to make phone calls to track down missing data and manually removing duplicate entries from their system, the spokesperson said.
While laws vary state by state, they generally require labs to report positive tests for certain diseases deemed to be a public health concern like HIV.
The coronavirus outbreak has prompted localities in California and New Jersey to request that labs also report negative test results — and generally turn around the data on faster timetables.
Some industry groups want the government to go further, urging HHS to push policies on increasing data flow to providers. And a group of congressional Democrats including Sens. Elizabeth Warren, Kamala Harris and Cory Booker have called on HHS to track race and ethnicity data to understand if the virus is going undetected in minority communities that typically have higher barriers to accessing care.
It’s not just public health officials who lack data. “Providers are desperate for a system that will allow them to determine if the patient in front of them has been tested, if the test has been resulted and what is the result,” said Steven Lane, a primary care physician with Sutter Health in San Francisco. He noted labs typically report back to the physician that ordered the test — which doesn’t help if the doctor was filling in on an emergency shift and isn’t involved in a patient’s long-term care.
One method of getting doctors test data — the health information exchanges — are hitting roadblocks. Lab companies, they say, won’t share their test results.
Commercial testing giant LabCorp said it’s provided data to CDC and state public health authorities but wouldn’t respond to questions about the flow of information to health information exchanges like the one in Colorado. Quest did not respond to multiple requests for comment.
Better data flow could bolster preparedness efforts in real time. Test results with not only names, but addresses and phone numbers, could enable police, firefighters and EMTs to stock ambulances with extra personal protective gear when responding to coronavirus cases. And health systems with enough data could crunch the numbers and develop predictive tools to help predict near-term demand.
Phone numbers and addresses also help public health officials do the critical task of contact tracing, or determining how many people were exposed to an infected individual.
But some reports from commercial labs are missing as much as 40 percent of demographic information — like phone number or addresses — that epidemiologists need to head off outbreaks in areas where the coronavirus isn’t yet prevalent, according to Janet Hamilton, senior director of policy and science at the Council of State and Territorial Epidemiologists.
“Instead of being able to immediately being able to initiate a lab result, there are times where the investigation has to wait,” she said. “We’re losing valuable time.”
The new testing mandates appear to be having some effect. New Jersey officials say 95 percent of their test results now show if a patient was positive, negative or if the test was inconclusive. In California, Santa Clara County CEO Jeff Smith said the Bay Area’s recent mandate for more testing is also yielding results, though he didn’t provide specific numbers.
But Hamilton said multiple layers of mandates could still prompt some providers to skip some reporting, leaving states in the dark.
CMS, for example, this week requested that nine different types of data be delivered via spreadsheet each day by 5 p.m. to a Department of Homeland Security email address. The letter said the information would help HHS and FEMA coordinate their support to different states.
The Association of American Medical Colleges’ chief scientific officer, Ross McKinney Jr., said lab staff already under the gun because of the pandemic would benefit from twice-weekly rather than daily reporting; and reporting through an easier to use web site instead of a spreadsheet.
He and Hamilton want a more coordinated approach. “Labs should be able to report once in a standardized way that serves the federal, state, and public health purposes,” he said.
But reporting mandates still don’t ensure everyone gets the data they need. And new entrants in the burgeoning coronavirus testing sector may not be closing all the information loops.
Verily, the Google affiliate tasked by President Donald Trump with creating a screening website that could filter patients into drive-through testing sites, doesn’t report results to patients’ primary care physicians, said one of the company’s partners in the project.
“Because it’s a crisis response, that capability doesn’t exist in our current flow,” said Sanjay Pingle, the CEO of PWNHealth, which provides telemedicine visits to test recipients of Verily’s operation, in an interview.
Pingle said that his company urged patients that test positive to follow up with their primary care physician, even though the doctor isn’t notified when the result rolls in.
“A hundred different pieces came together on the Verily thing, over a weekend,” he said, which prevented designers from integrating such a feature. He isn’t sure when such a capability will arrive, though other testing organizations have such capabilities.
Another data gap surrounds the health information exchanges that serve as a collection point for patient data in a state or region and ordinarily are accessed by providers trying to coordinate care.
The exchanges say testing companies are refusing to provide information — a situation that prompted Polis to weigh an executive order after an informal request he made last month was turned down.
Officials say the problem stems from lab companies’ reluctance to send results without prior authorization. If a patient is treated by an out-of-network physician, or if the doctor just didn’t sign the necessary paperwork, the result won’t show up in the exchange’s systems.
“[The big lab companies have] said time and again, we’ll do what the law tells us to do,” said Morgan Honea, the CEO of the Colorado Regional Health Information Organization, adding it will only take a state law or order to get results.
While lab companies typically cite privacy concerns in resisting such requests, Honea said his organization only shares data with people who have a relationship with the patient.
The data problems the pandemic has exposed are longstanding and much-discussed, Hamilton said. There just wasn’t enough work or investment put into solving the problems.
“People are now realizing we were allowing public health to stand at the end of the ticket line,” she said. “That’s no longer acceptable.”
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