Data Ready: Modern Policies and Processes
When it comes to data modernization, technology and policy must evolve hand in hand
“We wouldn’t attempt to predict severe weather like this, so why do we try to forecast the spread of deadly diseases this way?”
– Former CDC Directors Tom Frieden, Julie Gerberding, Jeffrey Koplan, William L. Roper, and David Satcher, The Hill, March 2022
Policies, laws, and regulations can have major and lasting effects on the resources and direction for modernization efforts. A big part of the DMI mission is to ensure the right policies, authorities, data use agreements, and relationships are in place to support modern data exchange.
When the COVID-19 pandemic hit, it took too long to access important data for making decisions about the nation’s public health. Currently, CDC receives data from a wide variety of public health and healthcare sources, often in slow or inconsistent ways. This creates major gaps and blind spots in our public health surveillance systems.
As a nation, we need to coordinate our data so that:
- Local health departments can target interventions where they’re needed most
- States can react to developing or ongoing situations based on actionable and complete information
- We have a clear, national picture that transcends state borders to guide federal decision-making and improve our country’s ability to act quickly
Putting processes in place before emergencies strike
When important information about disease outbreaks or other emergencies needs to be shared across jurisdictions or with CDC, agencies establish a Data Use Agreement (DUA). DUAs can ensure valuable health information is shared securely. However, it can sometimes take 6 or more months to develop a new DUA or rework an existing one. Sometimes multiple DUAs may be needed to get data where it needs to go.
Delays in establishing DUAs can hinder response activities and public health action. For example, when emergencies strike, data needs to move quickly between emergency departments, state and local public health departments, and CDC programs. There is no time to waste.
CDC’s investment in modernizing data began prior to the COVID pandemic, and we continue to improve national systems for communicating public health data. While CDC is working to streamline the process for getting DUAs in place, streamlining DUAs is not enough for the agency to get states the information they need to respond to outbreaks quickly. For example, CDC can standardize the language in these agreements in an established template, so we’re not starting from scratch when we need to exchange data quickly. The agency can also ensure that the language in the agreements protects privacy and that we understand the minimal data necessary to meet the needs of a response.
However, it can still take multiple months to get agreements in place, and emerging threats move far more quickly across state borders. Without data authority, CDC will not be able to act rapidly and efficiently to enable states and jurisdictions to act to address these threats.
With the end of the public health emergency, we need to remain proactive in finding ways to make sure data sharing can happen as efficiently and effectively as possible, so that state and local jurisdictions, federal agency partners, and CDC programs can better access and use the data they need, right when they need it most.