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A strong public health system can make a big difference for those who face stark health disparities. But epidemiologists serving Native American communities, which have some of the nation’s most profound health inequities, say they’re hobbled by state and federal agencies restricting their access to important data.
American Indians and Alaska Natives face life expectancy about 10 years shorter than the national average and, in early 2020, had a covid-19 infection rate 3½ times that of non-Hispanic Whites.
While tribal health leaders have fought for years for better access to data from federal agencies, the pandemic underscored the urgency of making data available to tribes and tribal epidemiology centers.
But even after the public health emergency put a spotlight on the data inequity, tribal public health officials say not much has changed and they still have trouble accessing data on infectious-disease outbreaks, substance use and suicide.
“We’re being blinded,” said Meghan Curry O’Connell, chief public health officer for the Great Plains Tribal Leaders’ Health Board and a citizen of the Cherokee Nation. O’Connell’s work fighting for greater access to data has been highlighted in recent years as the region faces a devastating and ongoing syphilis outbreak.
In 2022, the Government Accountability Office published a report documenting obstacles keeping federal public health information from tribes, including confusion about data-sharing policies, inconsistent processes for requesting information, poor data quality and strict rules for sensitive data on health issues such as substance misuse.
In one example, officials said that as of November 2021, 10 of the 12 tribal epidemiology centers in the United States had varying levels of access to covid data from the Centers for Disease Control and Prevention. While all 10 were given case surveillance data that included information on positive cases, hospitalizations and deaths, only six said they also had access to covid vaccination data from the Department of Health and Human Services.
The GAO report also found that staffers responding to data requests at HHS, the CDC and the Indian Health Service did not consistently recognize tribal epidemiology centers as public health authorities, forcing some to ask for data as researchers or file public records requests.
HHS officials agreed with all of the recommendations the GAO made as a result of its investigation, and after consulting with tribal leaders, this year published a draft policy outlining the types of data the agency would make available to tribes and tribal epidemiology centers, and establishing expectations for agency staffers about responding to data requests.
Some tribal leaders say the proposal is a step in the right direction but is incomplete. Jim Roberts, senior executive liaison in intergovernmental affairs at the Alaska Native Tribal Health Consortium, a nonprofit organization that provides care and advocacy for Alaskan tribes, said the GAO report didn’t address how federal agencies treat tribal governments, which also have a right to their data as sovereign nations.
While HHS continues to work on its policy, Roberts said a strong federal policy on data-use agreements would help tribes’ relationships with state governments, too.
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