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CDC moves forward on data-sharing — without Congress

Agency has pushed for more data-sharing capabilities but congressional Republicans have been wary

Mandy Cohen, director of the Centers for Disease Control and Prevention, unveiled a new data-sharing framework Thursday that does not require congressional help.
Mandy Cohen, director of the Centers for Disease Control and Prevention, unveiled a new data-sharing framework Thursday that does not require congressional help. (Tom Williams/CQ Roll Call)

In the wake of the COVID-19 pandemic and last year’s mpox outbreak, Centers for Disease Control and Prevention Director Mandy Cohen is updating the agency’s data-sharing strategy for the next two years — with a focus on what the agency can do without congressional help.

Republicans have been reluctant to hand more power to the CDC after the pandemic, with that distrust contributing to a number of issues, including a failure to reauthorize the 2006 pandemic preparedness law, which expired last September. 

The new policies outlined in the 2024-2025 public health data strategy do not necessarily require congressional authorities, instead focusing on encouraging partnerships between hospitals and local public health systems.

“I am being super practical about this. I love you, Congress, and we work with you very closely, but I am working with the assumption that there is not going to be some major new supplemental package of dollars coming our way this year,” Cohen said at the Kaiser Permanente Health Action Summit in Washington on Thursday.

While the CDC has made advances in data-sharing following COVID-19 and the mpox outbreak, public health officials argue more is needed to modernize the public health agency’s information technology systems.

During 2023, more than 11,000 health care facilities adopted electronic case reporting at the CDC’s request. Electronic case reporting helps move data quickly from hospitals and other  facilities to public health agencies, to alert them about potential threats and monitor disease spread.

For example, many hospitals use manual reporting for measles cases.

The new data-sharing strategy aims to further expand the number of facilities using both electronic case reporting and the Trusted Exchange Framework and Common Agreement, or TEFCA, to enable data-sharing with health care systems and providers.

“We don’t need Congress or more money,” Cohen said. “This is just us working together on our data standards.”

The CDC also wants to strengthen data-sharing for wastewater, hospitalization and hospital bed capacity. 

Finally, the strategy looks at increased reporting on social determinants of health-related data and health disparities.

While the new initiatives do not require congressional help, CDC officials say they have not abandoned the agency’s goal of enabling faster data-sharing among health care centers, states and the federal government, as outlined in the 2022 CDC Moving Forward plan.

But it’s unlikely that Congress and the CDC will resolve their issues anytime soon.

Former CDC Director Rochelle Walensky repeatedly asked Congress to give the agency the authority to collect public health data from states on disease surveillance, testing, hospitalizations and death after the end of the COVID-19 public health emergency, but without much success.

A broad data bill from Rep. Lauren Underwood, D-Ill., and Sen. Tim Kaine, D-Va., previously endorsed by Walensky was jettisoned in favor of limited data-sharing provisions in the fiscal 2023 spending law.

“I don’t see new resources on the horizon, so this is about prioritizing the resources we have and putting talent behind it,” Cohen said.   

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