Do I have to report COVID-19 test results at home?

According to official counts, fewer people are currently being diagnosed with COVID-19 than at almost any other time during the pandemic. As of April 19, there were an average of 40,000 new cases per day, compared to more than 800,000 per day at the height of the US Omicron wave.

But official counts are becoming increasingly misleading. More Americans than ever are testing positive on home tests — the results of which are rarely reported to public health authorities and thus are missing from official counts. Public health experts are concerned that the number of cases is now an unreliable way to assess the state of the pandemic and that there are countless more infections than the statistics show.

Under the CARES Act, COVID-19 testing sites are required to report results to public health departments. The results of supervised remote tests — which are sometimes required for activities such as travel and where a health professional monitors the test via video — are also usually reported. But individuals are not required to report the results of their standard home tests. Some state health departments, such as those in Colorado and Washington, collect self-reported data. Others, such as Massachusetts, are shifting to local health departments. But in many places there is no fixed system.

The CDC recommends that people share their positive results with their healthcare provider, who may in turn recommend a lab test to confirm the result and add to official results. But many people don’t tell their doctors they’ve had a positive rapid test — according to one survey, 25% of American adults don’t even have a primary care physician — and some doctors don’t bother to recommend a secondary test. About 30% of people who tested positive for COVID-19 through a do-it-yourself diagnosis did not receive a confirmatory test and thus likely were not counted, according to a January survey from the COVID States Project.

That may help explain why the total number of lab tests dropped from more than 2 million tests per day in January to about half a million per day in mid-April, along with the closure of some mass testing sites, the end of free testing programs for people who are uninsured, and the nationwide easing of pandemic precautions.

In some ways, it’s surprising that so many people get another test after getting a positive result at home. David Lazer, co-author of the COVID States Project survey and professor of political and computer science at Northeastern University, says he was surprised by his group’s findings; he expected that more than 30% of people would skip the secondary test. At this point in the pandemic, he suspects the true number may be higher, as people become more comfortable with at-home testing and it becomes increasingly difficult to find free testing sites.

“There is every reason to believe that the shortage is now much, much greater than it was in January,” said Lazer.

That’s a problem, health experts agree. In addition to wastewater monitoring and hospital admissions, testing data is one of the primary ways public health officials are monitoring the spread of the virus and looking for potential peaks and hot spots. Agencies, including the CDC, have said measures such as mask mandates can be applied fluidly, depending on current transmission patterns in a particular area. But if health officials don’t have an accurate picture of where the virus is spreading, they won’t be able to use appropriate mitigation strategies.

A national reporting system for home testing data could help solve that problem, but the question is how to make one work and whether to make the best use of increasingly taxed public health resources.

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The mixed blessing of home testing

dr. Michael Mina, chief science officer at the remote testing company eMed, has long argued that rapid testing is critical to managing the pandemic. Quick wipes for travel or social events, for example, can prevent people from unknowingly infecting others. It’s great that people are finally using self-tests on a regular basis, Mina says, but it’s time to better track the resulting data.

“Two years ago, I pushed for at-home testing, regardless of reporting, because of this tremendous urgency and need” for better prevention tools, he says. “Now we have two years to catch up.”

The need for better tracking is clear. During the Omicron wave, about 20% of people in the US with COVID-like symptoms used a home test, according to CDC data. Now more than ever, people are testing at home. For the first time during the pandemic, more people tested positive on home tests than other types of tests in the week ending April 16, according to new data from researchers at Boston Children’s Hospital and research firm Momentive (which has not yet been published). in a peer-reviewed journal). About 58% of the positive cases reported by the 474,000 people surveyed were picked up by a home test.

That’s better for individuals because it’s convenient, said John Brownstein, chief innovation officer at Boston Children’s Hospital. “But it’s not better for public health because public health data depends on detailed reporting.”

Many home test kits include a way to voluntarily report the results to the manufacturer, often by downloading an app; the company can then choose to share the results with public health officials. But few people use that option. Through a pilot program from the CDC and the U.S. National Institutes of Health, more than 1.4 million DIY tests were distributed to households in Tennessee and Michigan in 2021, but fewer than 10,000 test results were later recorded in an accompanying app, according to one article in Health Affairs.

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Likewise, as of August 2021, only about 5,700 people have reported a positive result through the Washington state hotline, a health department representative told TIME. That, too, represents a small fraction of the tests done during that period; during the peak of the Omicron peak, the state recorded thousands of cases every day.

The quest for a better system

It would be technologically easy for the CDC or any other US government agency to build a website where users can quickly log their home diagnostics. Brownstein’s research group already runs such a website to “bring the ‘public’ back into public health,” he says. Crowdsourcing data benefits individuals and researchers alike because “you get a disease weather map, where you can understand what’s going on and make decisions for yourself and your family.”

But it’s risky to use that approach to inform federal statistics, Lazer says, because a few “bad apples” may choose to falsely report many cases and skew the data. And without knowing how many tests have been done in total, it’s hard to understand the significance of the few results being reported, Mina says. (Brownstein, however, believes there is value in a national surveillance site, even without 100% participation. “Not many people [write Amazon reviews]but there are plenty of people out there willing to give you an idea of ​​the value of a product,” he says.)

As more people sign up for a reporting system, they’ll need a reason beyond being a “good Samaritan,” Mina says. His company, eMed, is trying to encourage self-reporting. After someone uses an eMed-compatible home test, the company generates a lab report that is shared with public health departments. That also benefits the individual, Mina says, as they can use the report to be approved for travel, work, or school if they are negative. If they are positive, they have proof of that result and are connected via telemedicine to a doctor who can prescribe treatment. Those may be better motivators for the average person than just contributing to statistics, Mina says.

Public health officials should also take advantage of existing tools by partnering with diagnostic companies to make their self-reporting systems easier and more accessible, Brownstein says. For example, instead of downloading an app, people could send in their results via text message.

Another option, Lazer says, would be to conduct repeated, large-scale surveys of U.S. households, asking if anyone in the home has recently tested positive for COVID-19 and, if so, what type of test.

A problem bigger than self-tests

For Beth Blauer, executive director of the Centers for Civic Impact at Johns Hopkins University and a government data systems expert, the data problem in the US involves more than home testing. Two years after the pandemic, states still don’t have a standardized way to collect and review the test results they get from testing sites, meaning federal case and testing data is flawed even before considering missing data from unloged rapid tests. , she says .

The situation is especially bad now that some public testing sites are shutting down and uninsured people can no longer be tested for free, Blauer added. Some people can test at home instead, but many cannot. Evidence shows that home testing is most common among relatively young, white, highly educated and wealthy people, which is perhaps not surprising given that each test costs about $10. Many people, especially those from underprivileged communities, simply won’t be tested if they can’t get a free diagnosis through work, school, or a convenient public testing site, Blauer says, meaning many cases will never be detected.

“If COVID has taught us anything, it’s that we need to be much more agile in the way we turn on and off public health interventions,” Blauer says. “As we dilute that data, it’s getting harder and harder to be agile.”

Finding ways to incorporate home testing data into the number of official cases could alleviate that problem. But that will only work if everyone has access to at-home tests and knows what to do with the information they reveal, says Benjamin Rader, a graduate research associate at Boston Children’s Hospital.

“If we’re trying to create a comprehensive surveillance system, it’s imperative that we make sure we reach everyone in society,” Rader says. “We need to make sure we’re doing things that target everyone and don’t miss any pockets of the US”

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