End of data sharing could make Covid-19 harder to control, experts and high-risk patients warn

KFF

Joel Wakefield's not just a hobbyist epidemiologist. It is not just a professional interest that drives Joel Wakefield to track the spread of covid.

A 58-year old lawyer from Phoenix, Arizona has an immune deficiency that increases the risk of serious outcomes due to covid-19 or other infections. Since 2020, he has spent a lot of time checking the state, federal and private sector covid tracking systems for data that will help him make daily decisions.

When will I see my grandchildren? When will I let my kids into my home? He said.

Although many Americans are now past the pandemic phase, for millions of people who have compromised immune systems or are otherwise more susceptible to covid, it is still important to assess safety using reliable data.

Wakefield stated, 'I do not have the luxury of completely ignoring it.'

The public health emergency declared by the federal government in January 2020 will expire on May 11, 2019. The declaration of emergency allowed for major changes to the U.S. healthcare system. For example, it required state and local health departments and hospitals to share data regularly with federal officials.

A skeptical Congress is unlikely to give agencies more powers. Private projects like The New York Times' and Johns Hopkins University's, which made the covid data accessible and useful to everyday people, ceased collecting data in March.

Data experts, public health lawyers, former and present federal officials, as well as patients who are at high-risk of severe covid outcomes, worry that the reduction in data access will make it more difficult to control covid.

In recent years there have been some improvements, including major investments in infrastructure for public health and updated reporting requirements in certain states. There are still concerns that the U.S. data infrastructure is in a shambles and could hinder the response to future threats.

Anne Schuchat said that if this information is not gathered in a timely and coordinated manner, we are all at risk.

In the early days of this pandemic, a lack of data left Schuchat and other federal officials with an unclear view of the coronavirus. Even as the public-health emergency opened up the possibility of data sharing, the CDC worked for months to increase its authority.

Eventually, after more than a full year of the pandemic, CDC obtained data from private health-care settings such as nursing homes and hospitals, commercial laboratories, state and local departments of health, and other health-care providers.

Director Rochelle Walensky said that CDC officials are working to maintain their authority over certain information, including vaccination records.

Walensky said to the U.S. House of Representatives in February that the CDC must be able to collect more data on public health to improve its response to threats.

She told KFF Health News that 'the public expects us to act quickly before things become public health crises'. We can't achieve this if we do not have data.

Walensky stated that the agency is negotiating agreements for information sharing with dozens state and local governments. It also partners with Centers for Medicare & Medicaid Services. The agency is also advocating for legal authority to access both private and public parts of the healthcare system. The requirement to report hospital data was separated from the health emergency, and will expire in one year.

It's a steep battle.

Walensky noted that lab-based covid tests will no longer be available. This data became less accurate as more people began to use at-home tests.

Walensky explained that the CDC will be tracking covid in a similar way to its seasonal influenza surveillance. This uses data from samples sites to establish general trends. The CDC's covid tracking will offer a more granular picture of the spread of the virus, and experts are concerned that this could make it difficult to detect new, troubling viral variants.

In general, federal courts, including the U.S. Supreme Court, have been unsupportive of increased public health powers over the past few years. Several courts issued rulings that blocked mask mandates, suspended mandatory covid vaccinations and ended the nationwide eviction ban.

Lawrence Gostin of the O'Neill Institute for National and Global Health Law, Georgetown University, described the CDC's data collection system as 'utterly antiquated' and 'utterly inefficient'. He said it's a mosaic, where states and territories collect their data in different ways and decide what to share with federal officials.

CDC counts hundreds of new deaths and thousands of new infections each week, despite the downward trend in covid numbers. Every day, more than 1,000 Americans also suffer from covid-related complications.

Gostin stated that when we stop looking at things, they become more indistinct. "Covid knowledge will fade into the background."

Marcus Plescia is the chief medical officer of Association of State and Territorial Health Officials. He said that although state and local health officials are willing to share their data with federal agencies they face legal obstacles.

To loosen restrictions by states on data related to public health, it will take some work. It's possible that the political will is lacking as many jurisdictions have reduced their public health powers over the past few years. Plescia says that until rules are changed, the CDC has limited power to assist states.

He said, 'Their arms are a bit tied in what they can do.

Data is used by public health officials to track the effectiveness of interventions and target them. Denise Chrysler is a senior advisor for the Network for Public Health Law and said that lack of information could create blind spots which can exacerbate poor outcomes for populations at high risk.

If you don't know who you are failing to serve, you won't be able to find them. She said that they would fall through the cracks.

Chrysler stated that the lack of data on covid by race and ethnicity during the early stages of the pandemic masked the impact of covid on marginalized groups such as Blacks and Hispanics. She said that some states, such as New Jersey and Arizona issued rules mandating the collection of race-ethnicity data in covid. However, these were only temporary measures tied to state emergencies.

The failure of private projects to supplement government resources was due to inconsistent local data.

Beth Blauer said that the data available to researchers was 'just terrible'. She helped launch Johns Hopkins' dashboard. The decision to terminate the program was a practical one.

She said, 'We relied on data that was publicly available, but the quality of the data had rapidly declined in the past year.

The rapid collapse of the data networks also raises concerns about long-term investments by state and local agencies in tracking covid or other threats.

Blauer said, 'I would like to have a set data that could help me make personal decisions.' Because I'm still afraid of a pandemic we don't know much about.

Schuchat, a former CDC official, says that there is a lot to be gained after years of underinvestment, and this was long before the covid epidemic. There are also high stakes for ensuring good data management.

She said that the CDC detected a vaping related lung disease in 2019 after receiving case reports from a Wisconsin hospital. She attributed the slow response of the United States to the opioid epidemic to poor access to emergency department data that showed a worrying trend in overdoses.

Schuchat stated that 'we're better off if we can detect problems before they become an emergency'. We can stop major emergencies.