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Bill to provide Tribes better access to health data

Tribal Health Data Improvement Act introduced to bolster Tribes’ ability to use health data, strengthen relations with CDC

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News from the office of Senator Tester

U.S. Senate — As part of his ongoing efforts to ensure Montana Tribes have the resources they need to combat the COVID-19 pandemic, U.S. Senator Jon Tester today introduced bipartisan legislation to ensure that Tribes are able to better access public health data that will help keep their communities safe and healthy.

Tester’s Tribal Health Data Improvement Act requires the Department of Health and Human Services to give Tribes direct access to public health data, directs the Centers for Disease Control and Prevention to strengthen relations with Tribes and Tribal Epidemiology Centers in order to improve accuracy of health data, and encourages data sharing agreements between states and Tribes/TECs.

“Native American communities across Montana are struggling to access public health data that is crucial to their ability to fight the coronavirus pandemic, as well as other health conditions that disproportionally impact Tribal communities,” said Tester. “This bill will ensure that Tribes, as well as Tribal Epidemiology Centers, are no longer denied access to the public health data they need, and will help improve overall data quality through direct coordination with the CDC and state governments.”

Native American communities often face glaring disparities across many health conditions such as diabetes, cancer, liver disease, kidney disease, and, more recently, coronavirus. Despite these health inequities, public health data systems at the Federal, state, and local levels indicate high levels of misclassification and undersampling of these communities, and Tribes additionally face significant challenges in accessing this public health data to correct these discrepancies.

Under federal law, Tribal governments and TECs are designated as “public health authorities,” allowing them to access public health tracking data at the Federal, State, and local levels. However, Tribes are routinely denied access to health data systems, limiting their ability to exercise their public health authority and address issues in data equality. They also have difficulty accessing CDC data to carry out their duties as sovereign nations, and continue to be disproportionately impacted by the COVID-19 pandemic.

Tribal Health Data Improvement Act would specifically:

—  Require the HHS to give direct access to public health data to Tribes, the Indian Health Service and TECs

—  Require the CDC to develop guidance for states and local health agencies on improving the quality and accuracy of birth and death record data for American Indians/Alaska Natives

—  Require the CDC to enter into cooperative agreements with Tribes, Tribal organizations, urban Indian organizations, and TECs to address misclassification and undersampling of American Indians/Alaska Natives on birth/death records and in health care/public health surveillance systems

—  Encourage states to enter into data sharing agreements with Tribes and TECs to improve access to public health data

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