The four of us spent the last three years immersed in collecting and reporting data on Covid-19 from every corner of the world, building one of the most trusted sources of information on cases and deaths available anywhere. But we stopped in March, not because the pandemic is over (it isn’t), but because much of the vital public health information we need is no longer available.
This is a dangerous turn for public health. The data on cases and deaths is critical for tracking and fighting the coronavirus, which has killed more than 1.1 million people in the United States and nearly 6.9 million worldwide. For the week of April 13 to April 19, 1,160 people were reported to have died from the virus in the United States. This is, in all likelihood, an underestimate.
Unfortunately, nearly all states have stopped frequent public reporting of new cases and deaths, making it difficult to enable us to see how the virus is trending. And the widespread use of at-home tests has meant that most positive results almost never get recorded in public health databases, making it virtually impossible to detect and monitor outbreaks in a timely way.
Three years ago the country’s public health establishment was caught flat-footed by the pandemic, and many lives were lost. There was no national system to monitor the spread of the coronavirus, which is essential to coordinate an effective response. Amazingly, many localities were faxing notifications to the Centers for Disease Control and Prevention; many still are. And the lack of uniform standards for reporting data prevented accurate and timely tracking of the virus. We were blind.
Officials at every level of government had to scramble to build that capacity. Governments were able to tailor their data reporting so it could be aggregated. They were assisted by data scientists and researchers outside of government who stepped in to build analytic tools and systems to follow the path of the virus, like the platform we and others created at the Johns Hopkins Coronavirus Resource Center.
But all of that took time.
In the early days of the pandemic, state and local jurisdictions made the right decision to share Covid data publicly — and not just through reports to the C.D.C. These local reports, published daily on online dashboards that detailed cases, hospitalizations and deaths, became the primary sources for our reporting at Johns Hopkins. Pulling the data closest to the outbreaks allowed us to publish nearly real-time information as the pandemic spread.
But almost as soon as local and state governments amassed the capacities to keep the public informed, we began to see across-the-board declines in the quality and availability of the information they were sharing. Understaffed local health departments had difficulty sustaining testing and data collection efforts; in the second year of the pandemic, many began to focus on the distribution of vaccines. Politicized rhetoric about vaccines also drove decisions in some parts of the country to end data reporting. As of this spring, only seven states continued to publish data on cases and deaths more than once a week.
The seven-day averages of cases and deaths still reported weekly by the C.D.C. is valuable but of limited use for spotting and reacting to trends. As testing data has declined and the public health emergency is about to end, hospitalization data collected and reported by the U.S. Department of Health and Human Services is the best information available, but it is insufficient to fully track and understand the pandemic because hospitalizations lag several weeks beyond infections.
We don’t want to be caught off guard again. Governments at all levels should be continuing to build the virus-tracking capacity that was hastily created as the Covid crisis grew. There is still much to do to fix the hodgepodge of antiquated, disconnected surveillance data systems that exist across governments. This is important not only for the next pandemic — and there will be one — but also to help the public health community understand and address other threats that kill people every day: infectious diseases, drug addiction, gun violence, obesity and poverty.
Here’s what we should be doing:
Establish uniform standards. More than 3,000 local and state public health offices in the United States often operate with incompatible data systems, and lack shared definitions of common data categories. In other words, the systems can’t communicate. The federal government and the C.D.C. should establish a uniform network of comprehensive public health data that helps local authorities stay ahead of the next virus and deploy resources to the most at-risk areas. Uniform data standards combined with prompt collection and analysis of that data and timely reporting of the information enables public health officials to focus on flare-ups and reduce the need for sweeping, polarizing and economically damaging mandates, like closing schools and businesses.
Diversify skills and collaborate. The United States needs to invest in developing a new generation of public health professionals steeped in three areas: systems thinking to plan across multiple disciplines, data management to improve information flow, and effective communication to counter misinformation. As we worked to track the virus and response, we collaborated daily with a broad range of experts including data scientists, engineers, epidemiologists, experts in law and policy, communications strategists and more. All these skills are needed to produce accurate information that creates public trust. To accomplish this, governments, universities and professional societies must collaborate to create the demand, develop the talent, continue to innovate and hold one another accountable.
Invest in the tools we need. At-home testing was a huge step forward in our ability to manage this virus, and we applaud the Biden administration for getting those tests to the public. But without a plan to collect data from at-home testing, we haven’t been able to count the results. The federal government also never invested enough in building genomic sequencing capacity to determine the genetic makeup of the virus and keep pace with the emergence of new mutations. This left a huge gap in our understanding of changing conditions. And in many instances, already-strained health care providers were further stressed during the pandemic by the time-consuming frustrations of relaying data using archaic technology.
Health security is national security. It should be funded like it. When Hurricane Katrina exposed how public safety agencies were hamstrung by incompatible radio networks, as they were in New York City on Sept. 11, 2001, Congress took action, though it took years, investing billions to make emergency communications interoperable.
Let’s learn the lessons of the pandemic. Decades of chronic underfunding of public health agencies must be reversed. Outdated disease surveillance systems, data sharing networks and laboratories must be modernized, and that requires significant investment.
To help, Congress must continue to finance the C.D.C.’s multiyear, billion-dollar-plus Data Modernization Initiative to create a public health data and surveillance system that can move at least as fast as the disease it’s tracking and bring together all levels of government.
We can’t afford to neglect our public health systems any longer. Panic is not the way we should respond to our next health crisis. We should be ready to take on what comes.
Beth Blauer, Lauren Gardner, Sheri Lewis and Lainie Rutkow helped lead the effort to build the Johns Hopkins Coronavirus Resource Center.
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