A strong public health system can make a big difference for those facing stark health disparities. But epidemiologists serving Native American communities, which have some of the deepest health inequalities in the country, say they are hampered by state and federal agencies that restrict their access to important data.
American Indians and Alaska Natives face a life expectancy of approximately 10 years shorter than the national average and, at the beginning of 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 highlighted data inequities, tribal public health officials say not much has changed and they still have trouble accessing data on infectious disease outbreaks, substance use and suicide.
“They are blinding us,” he said. Meghan Curry O’Connelldirector of public health of Great Plains Tribal Leaders Health Board and a citizen of the Cherokee Nation. O’Connell’s work in 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 released a report documenting obstacles that prevent federal public health information from reaching tribes, including confusion over data-sharing policies, inconsistent processes for requesting information, poor data quality, and strict rules for sensitive data on health topics such as substance abuse.
In one example, officials said that starting in November 2021, 10 of the 12 Tribal epidemiology centers in the United States had varying levels of access to COVID data. Centers for Disease Control and Prevention. While all 10 They were provided with case surveillance data that included information on positive cases, hospitalizations, and deaths, only six They said they also had access to Covid-19 vaccination data Department of Health and Human Services.
The GAO report also found that staff who responded to data requests at HHS, CDC, and the Indigenous Health Service They did not consistently recognize tribal epidemiology centers as public health authorities, forcing some to request data as researchers or submit 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 released a draft policy outlining the types of data the agency would make available to tribes and tribal epidemiology centers, and setting expectations for agency staff on how to respond to data requests.
Some tribal leaders say the proposal is a step in the right direction, but it is incomplete. Jim RobertsSenior Executive Liaison on Intergovernmental Affairs in the Alaska Native Tribal Health Consortiuma nonprofit that provides care and advocacy to Alaska tribes, said the GAO report failed to address how federal agencies treat tribal governments, which also have a right to their data as sovereign nations.
As HHS continues to work on its policy, Roberts said a strong federal policy on data use agreements would also help tribes’ relationships with state governments.
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