Native American health agencies struggled to access federal data amid pandemic

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Some tribal epidemiology centers reported having trouble receiving patient health data from the Indian Health Service, primarily due to federal and state rules and regulations around sharing and maintaining patient information, a new GAO report found. 

Alongside the myriad health care disparities between Native Americans and other populations in the U.S., data availability and access, including data on COVID-19 infections and cases, is lacking among some tribal communities.

This discrepancy is outlined in a new study from the Government Accountability Office, which analyzed relevant documentation gathered from 12 tribal epidemiology centers, or TECs. These documents included funding notices, program goals and health data access to institutions like the Centers for Disease Control and Prevention, Indian Health Service and state health departments. 

GAO officials also interviewed officials within these public organizations, particularly offices that service Native American agencies and organizations. Respondents from at least four TECs reported having trouble receiving patient health data from the IHS, primarily due to federal and state rules and regulations around sharing and maintaining patient information. 

“While the presence of data sharing systems and agreements has facilitated TECs’ access to data, TECs have been unable to access data in some cases where such systems and agreements have not been established or do not meet the needs of the TECs,” the report reads. 

The report also found that a lack of policies surrounding TEC’s individual authority to access epidemiological data also serve as a barrier to obtaining health data. At least five TECs mentioned that officials at the CDC and IHS denied them access to health data on the basis of the TECs’ individual authority as public health agencies.

Some respondents also cited inconsistent processes within the CDC and IHS to request health and epidemiological data. 

“Officials from six TECs told us that the process to request and obtain data from CDC and IHS was unclear and inconsistent within and between the agencies,” the GAO report said. “A lack of clarity in TECs’ authority to access data, and guidance and procedures to request and respond to requests, likely contributed to delays TECs have faced obtaining access to CDC and IHS data.”

GAO officials issued five recommendations in total—two to the CDC, two to the IHS, and one to the U.S. Department of Health and Human Services—to better share health data with TECs. These include having the HHS secretary craft a policy clarifying available HHS data and the CDC director develop agency procedures to better review TEC data requests and streamline the requesting processes.

The agency also recommends that the IHS director develop similar clarifying plans as the CDC to make requesting health data more efficient for TECs.

After reviewing the report, the HHS concurred with the GAO’s findings, and that plans to improve data availability are underway for both the CDC and IHS.  

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