Editor’s note: Find the latest COVID-19 news and guidance in Medscape’s Coronavirus Resource Center.

A clear sign the COVID-19 numbers just aren’t what they used to be: Groups that many have relied on as the best sources for updated data on the coronavirus pandemic have had to scale back their reporting because the lack of reliable information.

Johns Hopkins University and the University of Washington’s Institute for Health Metrics and Evaluation have retooled their systems for tracking COVID-19 tests, cases, and more.

Data scientists at Johns Hopkins started updating their numbers and projections once a day, 7 days a week, instead of once an hour. The move comes as more and more people began using home tests instead of visiting testing centers and, as a result, the number of official reported cases fell rapidly.

“Testing data has been problematic for some time, but the utility of official state testing results has been greatly diminished by the widespread use of at-home COVID tests, which are not tracked in most government data,” says Beth Blauer, data lead for the Johns Hopkins Coronavirus Resource Center.

As a result, Hopkins has stopped reporting testing results and positivity rates for each state. The current information on the site will still be displayed, but it will not be updated going forward.

You Can’t Track What You Can’t Count

Overall, it’s a case of having less to go by now. And when information is available, sometimes it’s unclear or inconsistent, Blauer says. Across vaccines, tests, cases, and deaths, more than half of states now report their numbers only once a week.

And that is a problem, experts say.

“Undercounting is bad because it does not give us a handle on the status of the pandemic and magnitude of spread or potential harm,” says Eric Topol, MD, director of Scripps Research Translational Institute in La Jolla, CA, and editor-in-chief of Medscape, WebMD’s sister site for medical professionals.

The lack of hard numbers is evident. The New York Times, which has one of the most robust COVID-19 tracking sites of any private institution, still updates its COVID-19 site regularly. But it now frequently includes caveats.

Today, for example, for New York City, the newspaper reports there were zero new cases yesterday.

“No new cases were reported in New York City yesterday. This may be due to a lapse in reporting of cases and does not necessarily mean that no people were infected yesterday,” says a note on the site.

Researchers can still look to the number of people hospitalized with SARS-CoV-2 infection and track COVID-19 deaths, because that data is still tracked. But those factors don’t get as close to a big picture like the positive case reports from large-scale testing sites earlier in the pandemic.

Further clouding the situation are the summer 2022 surge and vaccination rates, which suggest “considerable immunity” in most states, officials at the Institute for Health Metrics and Evaluation write in a Sept. 9, 2022 COVID-19 Results Briefing.

The briefing authors estimate that 80% of people in the U.S. have received at least one vaccine dose and 70% were fully vaccinated as of Aug. 29. CDC data says much the same.

But the University of Washington researchers estimate that 95% of people in the U.S. have been infected at least once.

The Best Shot at Vaccine Numbers

Johns Hopkins also is changing how it tracks COVID-19 vaccination numbers. Its Coronavirus Resource Center is shutting down its network of proprietary sources for tracking immunizations. Going forward, they will rely solely on CDC data for domestic vaccination numbers and the World Health Organization and Our World in Data for international immunizations.

All together, these are some major changes for a resource many relied upon for accurate COVID-19 tracking.

The Johns Hopkins Coronavirus Resource Center has been one of the leading resources for free, near-real-time pandemic data reporting. Its website has recorded more than 1.2 billion page views.

Basically “Flying Blind”

The Institute for Health Metrics and Evaluation has been another leading resource for continuously updated COVID-19 data.

Like the experience at Johns Hopkins, “The data is hindering our capacity and our ability to track COVID-19,” said Ali Mokdad, PhD. The institute, which at first updated figures twice a week during the pandemic, switched to updates once a month starting in March.

“We are having a hard time, quite honestly,” even with the statistical expertise of its staff, says, Mokdad, an epidemiologist and University of Washington professor of health metrics sciences. Many countries, for example, are not reporting information with the same quality or frequency.

Given this lack of data, he says, “You have to look at your own risk and you have to take care of people around you and in your own community. That’s the message for the public.”

Mokdad says there is more than home testing to blame.

For example, most of the Omicron infections, including BA.4, BA.5, and now BA.4.6, don’t have symptoms. “So about 75% of the people who are getting Omicron don’t have any symptoms, so they don’t have any reason to test themselves.”

“We are basically flying blind,” says Mokdad. “We don’t know how many people are infected in each location in order to be able to track [cases] and make a decision about what needs to be done. “

Johns Hopkins’s Blauer agrees that any quick reactions to future changes could suffer. “Public health officials can respond faster to emerging hotspots when data is available in near real time,” she says. “Many experts project a possible resurgence in infections in the fall and winter as we spend more time indoors.”

“So, we may see the impact of diminished government reporting if officials are unable to respond rapidly to new outbreaks,” she says.

Sources

Johns Hopkins Coronavirus Resource Center: “Johns Hopkins Changes COVID Tracking Methods.”

Institute for Health Metrics and Evaluation: “COVID-19 Results Briefing, United States of America, September 9, 2022.”

Eric Topol, MD, director, Scripps Research Translational Institute.

Beth Blauer, data lead, Johns Hopkins Coronavirus Resource Center.

Ali Mokdad, PhD, epidemiologist and health metrics sciences professor, University of Washington Seattle Institute for Health Metrics and Evaluation.

CDC: “COVID Data Tracker.”

The New York Times: “Track Coronavirus Cases in Places Important to You.”

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