Image Source: (Kris Hanning/University of Arizona/TNS)
Stephanie Russo Carroll, a citizen of the Native Village of Kluti-Kaah in Alaska, has been advocating for tribal data sovereignty since her doctoral research on health programs within six tribes 15 years ago. She faced challenges in obtaining vital statistics like birth and death rates, which were often incomplete or unavailable. This issue is part of a broader struggle for tribes to control and access their own health data, a concept known as data sovereignty, crucial for addressing health disparities in tribal communities.
Tribal health data is often withheld by state and federal agencies, and tribes struggle to obtain necessary information for public health efforts, especially during disease outbreaks like syphilis and COVID-19. The Trump administration’s removal of certain health datasets from federal websites exacerbated these issues. However, some tribes are securing data-sharing agreements with state health departments, such as the Tulalip Tribes in Washington state, which gained access to disease reporting systems.
Tribes’ inability to access crucial health data has hindered efforts to address pressing issues like syphilis, COVID-19 disparities, and other chronic health problems. During the COVID-19 pandemic, Native American and Alaska Native populations experienced higher infection and death rates, but inadequate or misclassified data further obscured the situation.
The lack of a national standard for tribal health data, combined with logistical and privacy concerns from federal agencies, has highlighted systemic barriers and inequities. Efforts like those of Carroll and other advocates aim to improve Indigenous data governance, ensuring tribes have control over the data that affects their health and well-being.
Learn more: https://www.miamiherald.com/news/nation-world/national/article303147266.html
