Data denials leave tribal health leaders scrambling during public health emergenciesIt’s not easy to make public health decisions without access to good data. And epidemiologists and public health workers for Native American communities say they’re often in the dark because state and federal agencies restrict their access to the latest numbers.The 2010 reauthorization of the Indian Health Care Improvement Act gave tribal epidemiology centers public health authority and requires the federal Department of Health and Human Services to grant them access to and use of data and other protected health information that’s regularly distributed to state and local officials. But tribal epidemiology center workers have told government investigators that’s not often the case.By July 2020, American Indians and Alaskan Natives had a covid-19 infection rate 3½ times that of non-Hispanic whites. Problems accessing data predated the pandemic, but the alarming infection and death rates in Native American communities underscored the importance of making data-sharing easier so tribal health leaders and epidemiologists have the information they need to make lifesaving decisions.Tribal health officials have repeatedly said data denials impeded their responses to disease outbreaks, including slowing contact tracing during the pandemic and an ongoing syphilis outbreak in the Midwest and Southwest.“We’re being blinded,” said Meghan Curry O’Connell, the chief public health officer for the Great Plains Tribal Leaders’ Health Board and a citizen of the Cherokee Nation. The sharing of data has improved somewhat in recent years, she said, but not enough.Federal investigators and tribal epidemiologists have documented a litany of obstacles keeping state and federal public health information from tribes, including confusion about datasharing policies, inconsistent processes for requesting information, data that’s of poor quality or outdated, and strict privacy rules for sensitive data on health issues like HIV and substance misuse.Limiting the ability of tribes and tribal epidemiology centers to monitor and respond to public health issues makes historical health disparities difficult to address. Life expectancy among American Indians and Alaskan Natives is at least 5½ years shorter than the national average.Sarah Shewbrooks and her colleagues at the Great Plains Tribal Epidemiology Center are among those who’ve found themselves blinded by bureaucratic walls. Shewbrooks said the data dearth was particularly evident during the covid pandemic, when her team couldn’t access public health data available to other public health workers in state and local agencies. Her team was forced to manually record positive cases and deaths in the 311 counties ...
