BOfficial counts show that COVID-19 is being detected in a smaller number of people now than ever before during this pandemic. As of April 19, there were an average of 40,000. This compares to over 800,000. in the U.S. Omicron waves peak.
However, official statistics are becoming more misleading. More Americans than ever are testing positive on at-home tests—the results of which are rarely reported to public-health authorities, and are thus missing from official tallies. Experts in public-health worry that the case numbers used to assess the severity of the pandemic are no longer reliable and there may be more cases than the statistics indicate.
The CARES Act requires that COVID-19 test sites report their results to the public-health department. The results of proctored remote tests—which are sometimes required for activities including travel and involve a health professional supervising the test over video—are usually reported, too. But individuals aren’t required to report the results of their standard home tests. Some state health departments collect data that individuals provide, such as those in Washington and Colorado. Some, such as Massachusetts, turn to the local health department. But in many places, there’s no established system.
The CDC suggests that you share your positive results with your doctor. They may recommend a laboratory test in order to confirm it and to add it to the official statistics. But many people Don’t tell their doctors they’ve had a positive rapid test—25% of American adults don’t even have a primary care doctor, according to one study—and some doctors don’t bother recommending a secondary test. About 30% of people who tested positive for COVID-19 via a DIY diagnostic did not get a confirmatory test and thus probably weren’t counted, according to a January survey from the COVID States Project.
That may help explain why overall laboratory testing volume declined from more than 2 million tests per day in January to around 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 relaxation of pandemic precautions.
In some respects, it’s surprising that so many people doAfter obtaining a positive test at home, you can take another one. David Lazer, co-author of the COVID States Project survey and a professor of political and computer sciences at Northeastern University, says he was surprised by his group’s findings; he expected more than 30% of people to skip the secondary test. At this point in the pandemic, he suspects that the real number is higher, since people are increasingly comfortable with at-home tests and it’s growing harder to find free testing sites.
“There’s every reason to believe that the missingness is much, much larger now than it was in January,” Lazer says.
That’s a problem, health experts agree. Along with wastewater surveillance and hospitalization rates, testing data is one of the major ways public health officials track the virus’ spread and look for potential surges and hotspots. Based on the current transmission patterns, agencies such as the CDC say that mask mandates are flexible and can be applied quickly. 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-test data could help solve that problem—but the question is how to make one work, and whether it’s the best use of increasingly strained public-health resources.
Home tests are a mixed blessing
Chief science officer of eMed’s remote testing firm, Dr. Michael Mina has long argued for rapid tests as a key to containing the pandemic. For example, people can avoid infecting other people by quickly swabbing their hands before they travel or attend social events. It’s great that people are finally using self-tests regularly, Mina says, but it’s time to better track the resulting data.
“Two years ago, I was pushing for at-home tests regardless of reporting, out of this massive urgency and need” for better prevention tools, he says. “Now, we’ve had two years to catch up.”
There is a clear need to improve tracking. According to CDC data, approximately 20% of Americans with COVID symptoms underwent an at-home test during the Omicron wave. More people now test at home. For the first time during the pandemic, more people tested positive on at-home tests than other types of tests during the week ending April 16, according to new data from researchers at Boston Children’s Hospital and survey company Momentive (which has not yet been published in a peer-reviewed journal). An at-home test was used to detect 58% of positive cases among the 474,000 respondents.
That’s better for individuals because it’s convenient, says John Brownstein, chief innovation officer at Boston Children’s Hospital. “But it’s not better for public health, because public-health data relies on detailed reporting.”
A lot of at-home testing kits offer a means to report the test results to the company, sometimes by downloading an application. The company might then decide to share them with the public-health authorities. This option is rarely used. Through a pilot program run by 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 logged in a companion app, according to an article in Health Affairs.
Similarly, only about 5,700 people have reported a positive result through Washington State’s hotline since August 2021, a health department representative told TIME. This is a small fraction of all the Omicron surge cases that were being recorded every day.
Search for a better system
The CDC and other U.S. agencies could easily create a website that allows users to log in their home diagnoses. Brownstein’s research group already runs such a website to “put the ‘public’ back in public health,” he says. Crowdsourcing data benefits individuals as well as researchers, because “you get a disease weather map, where you can understand what’s going on and make decisions for yourself and your family.”
But using that approach to inform federal statistics is risky, Lazer says, because a couple of “bad apples” could choose to falsely report many cases and skew the data. And without knowing how many total tests have been taken, it’s hard to know the significance of the few results that are reported, Mina says. (Brownstein, however, thinks there’s value in a national surveillance site, even without 100% participation. “Not many people [write Amazon reviews], but there are enough people who are willing to give you a sense of the value of a product,” he says.)
For more people to opt in to a reporting system, they would need a reason beyond being a “Good Samaritan,” Mina says. His company, eMed is encouraging self-reporting. eMed provides a home-test that’s compatible with eMed and generates a report which can be shared with health departments. That also benefits the individual, Mina says, because they can use the report to be cleared for travel, work, or school if they’re negative. If they’re positive, they have proof of that result and will be connected by telemedicine to a doctor who can prescribe treatment. Mina believes that these are better motivations than just contributing to statistics.
Brownstein suggests that public health officials also should take advantage of the existing tools and work with diagnostics firms to improve their self-reporting system. For example, instead of downloading an application, users could submit their results using a text message.
Lazer also suggests that you conduct large, repeated surveys of American households to determine if any of your household members have tested positive or negative for COVID-19.
Self-tests are not enough to solve the problem
Beth Blauer is the executive director at the Centers for Civic Impact at Johns Hopkins University, and an expert in government data systems. She says that the U.S. data problems go beyond at-home testing. Two years into the pandemic, states still don’t have a standardized way of collecting and assessing the test results they get from testing sites, which means federal case and testing data is flawed even before considering the missing data from unlogged rapid tests, she says.
Blauer says that the situation has become even more dire now, as some of the public testing sites have been shut down. Uninsured individuals can’t get tested free. Some people might test at home instead, but many won’t. Data show that home testing is most common among those who are fairly young, white, highly educated, and wealthy—perhaps unsurprising, given that each test costs about $10. Many people, especially those from underserved communities, simply won’t get tested if they can’t get a free diagnostic through work, school, or a convenient public test site, Blauer says, which means many cases will never be detected.
“If COVID has taught us anything, it’s that we have to be much more agile in the way that we dial up and dial down public-health interventions,” Blauer says. “As we dilute that data, it becomes harder and harder to be agile.”
It is possible to incorporate at-home data into official case counts by finding ways. 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 fellow at Boston Children’s Hospital.
“When we try to create a comprehensive surveillance system, it’s imperative that we make sure we’re reaching everyone in society,” Rader says. “We need to make sure we’re doing things to target everyone and not miss pockets of the U.S.”
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