COVID-19 rapid tests are easy to take—and then toss. So most people never report their results, which leaves health officials with an incomplete picture of how much virus is circulating and where. The convenience of the at-home tests have made PCR tests, which require a doctor’s prescription and a lab to run them, much less popular than they were earlier in the pandemic. PCR test results currently make up the bulk of documented case numbers, so the total is always an undercount.
Knowing the true volume of cases helps health authorities direct appropriate resources, including vaccines and treatments, to areas where cases are surging and ensure that there are enough medical personnel to care for sick patients. And it can alert them to increases that could indicate a more virulent or transmissible variant.
Some states have tried to rescue rapid-test results through websites where residents can report their results. In Maryland, for instance, the At-Home Test Report Portal triggers a contact-tracing process for people who report positive results, which in turn provides people with letters to excuse them from work or school.
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But more complete data-gathering requires a national effort, which the federal government launched in Nov. 2022. The website MakeMyTestCount.org allows people to anonymously record whether their self-test for COVID-19 was positive or negative. “There is a big gap between the amount of testing going on and the amount of data being reported,” says Andrew Weitz at the National Institute of Biomedical Imaging and Bioengineering (NIBIB), a branch of the National Institutes of Health that developed and runs the site.
The site launched quite a bit after the first at-home tests appeared on the market in late 2020. But the whole idea of putting a test for an infectious disease into the hands of the public is still relatively new, says Weitz. “Prior to COVID-19, there was no concept for doing testing in the home setting, aside from pregnancy tests,” he says. Not having a system in place to collect rapid test readouts was a result of “not knowing what approach would work, and not knowing how much adoption at-home tests would get.”
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Results are relatively easy and anonymous to enter. The site does not collect personal information such as name, date of birth, or address (unless people wish to provide it), though it does ask people to enter their age and zip code for more visibility into where the virus is bubbling up. “The main hurdle is growing awareness of the site—how to get people to find out that the site exists and report their results,” says Weitz. Since the site’s launch, usage has remained consistent and isn’t tapering off, which is encouraging. Yet only 55,000 results have been reported: a fraction of the estimated millions of people who have tested themselves.
Getting people to voluntarily take the time and effort to report their rapid-test results has proven challenging. To make the user-experience easier, Weitz says the government is working with rapid test manufacturers to include a QR code or other way for people to link easily to MakeMyTestCount.org. Such visibility to the site might prompt more people report their results. NIBIB is also gearing up to allow state health departments to merge their test result programs with the federal site by embedding MakeMyTestCount.org into the states’ websites (though some states that practice contract-tracing or exposure notification are hesitant to do so, since those practices require more detailed private information and the federal site is anonymous.)
Ultimately, most Americans will probably need incentives to self-report their results, Weitz acknowledges. “Why is someone going to report their result and take the time to do that if they are not getting anything back in return?” he says. He and his team are working on some additional features to MakeMyTestCount.org that might encourage more reporting, including a testing diary that would allow people who report multiple test results to see all of their tests in one place. Other possibilities, which are still being considered, include a testing passport with a QR code that could serve as verification of a negative test for any situations that would require it.
Individual states could also encourage more reporting by tying free COVID-19 treatments like Paxlovid for eligible people to self-test reporting. Massachusetts, for example, offers such treatments, via provided health care professionals, for free to people who enroll and report their positive at-home tests.
The government is also exploring other incentives, via insurers or employers, to encourage people to report their results. But Weitz says that while the NIBIB has reached out to insurers, the response hasn’t been encouraging—again due to data-sharing issues—since the companies require more personal information to verify the identities of their beneficiaries and the federal program does not.
Other experts believe in a slightly more involved approach. Dr. Michael Mina, chief medical officer at eMed, digital health company that distributes self tests and provides telehealth services, has suggested connecting the tests to telehealth providers, a digital health service that his company provides. Some versions of at-home kits sold in pharmacies already make this possible; they provide a link through which users can connect to a certified health care provider, who watches as the person opens the kit, takes the test, and verifies the result. (People have used these to verify their negative status before entering countries where testing is required, for example.) Tying more of these tests to health professionals would be one way to record more results and provide people with advice on what to do if they are positive.
As the world learns to live with COVID-19, and turns increasingly to self-testing, perceptions about diagnosing infectious diseases at home will have to change. Along with that evolution will come better ways of ensuring that all of the data generated in homes across the country isn’t lost to health experts.