Throughout the pandemic, a lack of comprehensive and cohesive data collection and reporting on Covid-19 cases, vaccinations, and more has "been very harmful to [the United States'] response." And unless public health data systems improve going forward, health officials warn that "we will always be months behind" during a crisis.

A lack of cohesive data has hampered the pandemic response

Currently, around 400 to 500 people are still dying from Covid-19 every day, but a lack of comprehensive data has largely obscured which groups are the most impacted, as well as what can be done to reduce these numbers.

According to Michael Osterholm, director of the Center for Infectious Disease Research and Policy at the University of Minnesota, most people are not at a high risk of dying from Covid-19, "and yet people are dying … What is it that makes people vulnerable to serious illness? Who is it that's ending up in our ICUs? We don't know. Our public health information systems are not providing us that kind of data."

Even this far into the pandemic, the United States still does not have detailed information about whether people have been vaccinated, the number of shots they've received, or if someone has received any kind of Covid-19 treatment, such as Paxlovid.

Stephen Kissler, an infectious disease researcher at the Harvard School of Public Health, said that a lack of standardized data collection across cities, states, and the federal government has contributed to the current dearth of Covid-19 data.

"A lot of public health happens at city level or lower so, because of that, it's really hard to combine data across states to assess who is ending up in the hospital or dying of Covid-19," Kissler said. "The mix is hard to standardize."

Although the United States invested a significant amount of money to modernize data systems for private hospitals and health care providers, the same has not been done for state and local health departments, which are still largely relying on outdated technology and software.

In addition, the Covid-19 infection data collected at the local level and sent to CDC is often incomplete, missing information on race/ethnicity, whether an individual had underlying conditions, whether they were hospitalized or died, and more. According to the New York Times, only a patient's age, sex, and geographic location are regularly recorded in Covid-19 case surveillance data.

"We've started from really broken systems," said Megan Tompkins, a data scientist and epidemiologist who previously managed Alaska's Covid-19 data operation. "That meant we lost a lot of the data and the ability to analyze it, produce it or do something with it."

In addition, several health officials have noted that this lack of data has significantly impacted the United States' ability to respond to the pandemic, including decisions about booster doses.

"Such decisions turn on how well the vaccines perform over time and against new versions of the virus. And that requires knowing how many vaccinated people are getting so-called breakthrough infections, and when," the Times reports.

According to Peter Marks, the top vaccine regulator at FDA, CDC's Covid-19 data "is useless for actually finding out vaccine efficacy" since it does not include information on breakthrough cases. Instead, regulators have had to rely on data from various regional hospital systems, as well as information from other countries, such as Israel.

"It has been very harmful to our response," said Ashish Jha, the White House Covid-19 response coordinator. "It's made it much harder to respond quickly."

Now, the same problem is also occurring with the monkeypox outbreak in the United States, the Times reports. Once again, state and federal health officials are struggling to consolidate data from disparate sources to inform their monkeypox response.

"We can't be in a position where we have to do this for every disease and every outbreak," said CDC Director Rochelle Walensky. "If we have to reinvent the wheel every time we have an outbreak, we will always be months behind."

Can public health data systems be improved?

A lack of funding and staff has largely hindered state and local public health agencies from modernizing their data systems and expanding their collection efforts. According to a study from the de Beaumont Foundation, public health agencies have lost roughly 15% of their staff between 2008 and 2019.

During the pandemic, funding for public health has increased, with some funds specifically set aside for data modernization efforts. For example, the CDC's $50 million annual data modernization budget was doubled this fiscal year, and some key senators believe that it will double again next year. In addition, two pandemic relief bills have provided an additional $1 billion in funds, including for a new center to analyze outbreaks.

However, Walensky noted that while over a $1 billion in funding for data modernization sounds impressive, it is roughly what a single major hospital system would pay to move their health records to a digital system.

Going forward, health officials hope to rely on EHRs to modernize the country's disease surveillance system. Under this new system, when a doctor diagnoses a disease that is supposed to be flagged for public health authorities, the patient's EHR will make note of the case and report it to state and local health departments.

According to the Times, the federal government is requiring hospitals and clinicians to show progress toward automated case reports by the end of the year or potentially face financial penalties. However, only 15% of the over 5,000 hospitals certified by CMS are currently generating electronic case reports.

Many experts say that while automated case reports from the private sector will help improve data surveillance, public health departments first need to modernize their data operations so they can actually process the reports hospitals and providers send to them.

"People often say, 'That's great, you put the pitchers on steroids, but you didn't give the catchers a mask or a good mitt,'" said Micky Tripathi, the national coordinator for health information technology at HHS. (Flam, Bloomberg/Washington Post, 9/20; LaFraniere, New York Times, 9/20)