CDC Needs Better Data Reporting, Sustained Funding, Say Critics

In April of this year, Rochelle Walensky, MD, MPH, the director of the Centers for Disease Control and Prevention (CDC),  announced plans to revamp the agency after mounting criticism of its lagged response to the COVID-19 pandemic. The CDC’s public communication around the pandemic has been labelled “confusing” by medical organizations, and more recently, delays with monkeypox testing and vaccine availability mirror similar mistakes made during the early days of COVID-19.

Officials from the US Health Resources and Services Administration, part of the US Department of Health and Human Services, have completed a 1-month review of the CDC, but the agency has not yet shared the conclusions of the review or plans on addressing any shortcomings that may have been noted.

“The CDC director is now synthesizing the information, identifying themes, and prioritizing next steps to formalize approaches and find new ways to adapt the agency to the changing environment,” said Jason McDonald, Dr Walensky’s press secretary, in an email to Medscape Medical News. “She hopes to share her findings and recommendations with CDC leadership and the broader CDC community when they are finalized,” he added.

Public health experts told Medscape that there are two major changes that need to occur at the agency and in public health in general: a modernized data system and sustained funding.

Modernize the Health Data System

Accurate data is considered the backbone of public health, but the United States has an “antiquated” national health data information system, Georges Benjamin, MD, executive director of the American Public Health Association, told Medscape. “We have some really good, targeted, siloed systems that don’t talk to one another and don’t share data,” he said. Outside of emergency situations, the CDC does not have much power to demand timely data sharing from states, Benjamin noted.

Often, the latest data that the agency is working with are at least 1-2 years old, said Phillip Chan, MD, an associate professor in the Department of Medicine at Brown University and an infectious disease physician in Providence, Rhode Island. A public health data system that delivers more timely data would help the agency respond more effectively to identified health issues, he said.

Former CDC director Robert Redfield, MD, expressed the need for a modernized data system in a public forum on the CDC sponsored by the Harvard School of Public Health on April 5, just 1 day after the CDC announced its revamp. One of his first briefings in 2018, Redfield said, was on opioid deaths, but that the available data only captured information through 2015. Rather than using recent data to affect outcomes in public health, he felt like a “medical historian,” he said.

But to make those changes would require rethinking the relationship between local, state, and federal public health agencies. Outside of emergency situations, the health information that states provide to the CDC is largely not mandated, said Shelley Hearne, DrPH, the director of the Lerner Center for Public Health Advocacy at Johns Hopkins University Bloomberg School of Public Health, Baltimore. And the data that are shared with the CDC is not standardized from state to state. This issue became particularly clear during the pandemic, she noted. “You had every state choosing how they wanted to report COVID cases and COVID deaths. Some, to this day, never reported [outcomes] based on race,” she said in an interview with Medscape.

For a national data system to be effective, the CDC needs to take a stronger regulatory role, standardizing what information is reported, how it is documented, and when it is sent to the agency, she noted.

In 2019, the CDC launched the Data Modernization Initiative (DMI) to address these issues, with the goal of having “better, faster, actionable intelligence for decision-making at all levels of public health,” said Daniel Jernigan, MD, MPH, deputy director for Public Health Science and Surveillance at CDC in an interview with Medscape. In addition to improving technology and moving data sharing to a cloud-based system, he said, these efforts could also include legislation to better standardize how data are shared at the local, state, and federal level.

But based on a report by the Healthcare Information and Management Systems Society (HIMSS), these efforts are largely underfunded. The society estimated an investment of $36.7 billion over the next 10 years would be needed to modernize health data systems and public health interoperability, and that implies a need for about $3-$4 billion in funding every year. In fiscal year (FY) 2020, the initiative received $50 million in base funding, as well as $800 million in supplemental funding once the COVID-19 pandemic began, Jernigan said. In FY 2022, this base funding was bumped to $100 million, and the proposed FY 2023 budget asks for $200 million to be allocated toward the initiative, far short of the need indicated by HIMSS.

Build Infrastructure to Respond to Future Threats

Though delayed data reporting is a huge issue, there is also a need to build out infrastructure so the agency can respond to any health situation in a timely manner, experts say. The events of the past 2.5 years have revealed the importance of paying attention to infectious diseases of pandemic potential, Chan said. Although there are designated reporting structures for known diseases like HIV, similar systems for COVID-19 and monkeypox had to be built out.

“We need to have a public health system nationally and certainly on the state level that is flexible and nimble enough to be able to address these threats — these infectious diseases — as they emerge,” Chan added.

By building the infrastructure to respond to future diseases of pandemic potential, it would be easier to pivot these resources where needed during emergency health situations, he noted. But building this type of response system requires funding. Though the government provides very helpful aid during a crisis, there is not much sustained funding to improve the US health response systems during nonemergency times, noted several former CDC directors in the Harvard public forum.

“There will be a burst of money, then it will be gone 3 years later,” said Hearne. “It’s this crazy rollercoaster that makes it impossible to hire and put those systems in place.”

During the Harvard public forum, Tom Frieden, MD, MPH, former CDC director under President Obama, said in a recorded response that US health preparedness should be taken just as seriously as our military preparedness. “In peacetime, we don’t cut military and intelligence gathering capabilities so that we are at risk,” he said. “Why then, are we starving our health defenses when those threats are no longer in the headlines?”

The US government spending on military preparedness consistently dwarfs money spent on public health. The proposed FY 2023 budget appropriates $10.7 billion to the CDC; in contrast, the US Department of Defense receives $773 billion. During the forum, former director Redfield said that the US investment in public health should be proportional to what the country invests in our national defense.

But that funding needs to come alongside the CDC taking a more regulatory rather than advisory role in public health, Hearne said. By building out coordinated and standardized public health systems at the local, state, and federal level, the United States will be better prepared to respond to future health threats, she noted. “If we do it right, this gets us not just ready for the next pandemic, but it gets us healthier for that next pandemic,” she said, “and it actually makes us healthier overall as a nation.”

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