WASHINGTON, D.C. [09/10/2020]—Today U.S. Senators Tina Smith (D-Minn.) and Lisa Murkowski (R-Alaska) introduced bipartisan legislation to help Tribes access public health data and address health disparities that hit American Indian and Alaska Native (AI/AN) communities especially hard. The Tribal Health Data Improvement Act would strengthen data sharing between Tribes, Tribal Epidemiology Centers and the Centers for Disease Control and Prevention (CDC) so Tribes can more effectively address public health challenges.

Tribes and Tribal Epidemiology Centers are routinely denied access to important health data systems, despite having clearance to do so. Accessing federal and state public health data is critical for engaging in preventative public health work and combatting current health crises. Structural barriers to accessing data have been especially problematic during COVID-19, which has disproportionately hurt 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.

AI/AN communities also face stark health disparities across multiple health conditions including diabetes, cancer, liver disease and kidney disease. But these inequities are 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 and state public health authorities to identify best practices for the collection of health data on race and ethnicity.  

“We need to respond to the deep institutional inequalities that are harming the health of Indigenous people, especially during COVID-19,” said Sen. Smith. “Tribes and Tribal Epidemiology Centers should be able to access to public health data. And we need to fix and prevent future health data errors about American Indian and Alaska Native (AI/AN) individuals. My bipartisan bill is an opportunity for Congress to help Tribes improve public health in communities across the country.”

“American Indian and Alaska Native communities face stark health disparities. In addition to these alarming health inequities, high rates of misclassification and undersampling of these populations are far too common in our public health data systems at the Federal, State, and local levels. As we navigate COVID-19, we know that Tribes have faced significant challenges in accessing CDC data to carry out their responsibilities to their members,” said Sen. Murkowski. “The changes made by this legislation will go a long way in improving the quality and accuracy of Tribal health care data, including amending a statute that has posed many challenges to the Alaska Native Tribal Epidemiology Center’s ability to access life-saving data from the CDC. I’m proud to join Senator Smith in leading this important legislation.”

“The National Indian Health Board (NIHB) strongly supports the Tribal Health Data Improvement Act. Nationwide, there is a paucity of accurate and reflective public health data concerning American Indians and Alaska Natives (AI/ANs) stemming from high rates of misclassification and undersampling of AI/ANs in state and local disease surveillance systems. The COVID-19 pandemic, and its disproportionate impact on Indian Country, has shed an urgent light on these long-standing challenges and deficiencies in AI/AN public health data. This bill would break down barriers in Tribes’ and Tribal Epidemiology Centers’ access to federal public health data, which is important in controlling COVID-19 in hard-hit Tribal communities. It would also fund Tribal governments and Tribal organizations to work with state and local health agencies and require that they improve their data systems to accurately capture birth and death rates for AI/ANs, which has posed an issue long before COVID-19 but became even more evident as our Tribal members are succumbing to the virus. NIHB urges immediate action to pass this critical legislation.” - Stacy A. Bohlen, Chief Executive Officer of the National Indian Health Board.

Specifically, the 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

In addition to Sens. Smith and Murkowski, the legislation is supported by Sens. Jon Tester (D-Mont.), Steve Daines (D-Mont.), Elizabeth Warren (D-Mass.) and Kevin Cramer (N.D.)

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

You can read a summary of the bill here.