Lawmakers' Bill Would Clarify Tribes’ Authority to Access Public Data to Prevent, Combat Health Challenges

WASHINGTON, D.C. [05/3/2021]— U.S. Senators Tina Smith (D-Minn.) and Lisa Murkowski (R-Alaska) introduced bipartisan legislation to help Tribes address the coronavirus (COVID-19) pandemic and other public health challenges. The Tribal Health Data Improvement Act would strengthen data sharing between Tribes, Tribal Epidemiology Centers and the Centers for Disease Control and Prevention (CDC).

Over the past year, Tribes and Tribal Epidemiology Centers have been denied access to public health data about the virus spreading near Tribal lands, despite their authority to receive this data. This severely limits the ability of Tribal communities to prevent and combat health crises, and represents yet another broken promise by the federal government. These structural barriers to accessing data have been especially problematic during COVID-19, which has disproportionately hurt American Indian/Alaska Native (AI/AN) communities. This bill clarifies that Tribes and Tribal Epidemiology Centers, as public health authorities, should be granted access to the data they request.  

“We need to root out the deep institutional inequalities that are harming the health of Indigenous people. COVID-19 has not been the great equalizer, and Native communities have been among those hardest hit,” said Sen. Smith. “These inequities are the direct result of the federal government’s failure to live up to its treaty and trust obligations. My bipartisan bill with Sen. Murkowski is one of the many steps Congress should take to support Tribal public health efforts. I'll continue to lift up Native communities' ideas for how best to move forward.

“Native communities across the country experience stark health disparities including high rates of diabetes, heart disease, cancer, liver disease, and kidney disease. Despite knowing these health inequities for American Indian and Alaska Natives, reports from public health surveillance data systems of Federal, state and local levels indicate undersampling and misclassification of natives,” said Senator Murkowski. “COVID-19 further highlighted the significant challenges that Indian Tribes are facing by not being able to access and contribute to data collected and used for public health surveillance. The Tribal Health Data Improvement Act helps to alleviate these identified issues by reporting more accurate, and streamlined access to health data. Encouraging better partnering and sharing of information will help strengthen the relationships between the Federal, Tribal, state and local levels of government, and ultimately help save lives.”

“The National Indian Health Board supports a bill that strengthens public health data for Tribes, and Tribes believe that the Tribal Health Data Improvement Act will help fill gaps in the access, quality and delivery of data for Tribes and Tribal Epidemiology Centers who are at the forefront of COVID-19 activities like testing and contact tracing. The pandemic has transformed the way healthcare services are delivered for the Indian Health Service and Tribal facilities, and Tribes hope this bill will ease concerns over the lack of lack of direct Tribal access to COVID-19 data,” said Samuel Moose, NIHB Treasurer and Bemidji Area Representative and Director of Human Services at Fond du Lac Band of Lake Superior Chippewa.

AI/AN communities also face stark health disparities across multiple health conditions including diabetes, cancer, liver disease and kidney disease. But these inequities can be underestimated due to inaccurate data at the state and federal level, which too often misclassifies or undercounts AI/AN individuals. This bill would address this problem by directing federal public health authorities to identify best practices for the collection of health data on race and ethnicity. 

The bipartisan Tribal Health Data Improvement Act would:

  • Require the Department of Health and Human Services to give direct access to public health data to Tribes, the Indian Health Service, and Tribal Epidemiology Centers 
  • Require the Centers for Disease Control and Prevention (CDC) to develop guidance for States and local health agencies to improve 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 Tribal Epidemiology Centers 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 Tribal Epidemiology Centers to improve access to public health data

The Tribal Health Data Improvement Act is endorsed by the National Indian Health Board (NIHB), National Council of Urban Indian Health (NCUIH), Seattle Indian Health Board, and the American Academy of Pediatrics.

You can read a summary of the bill here and bill text here.

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