Making public health decisions without access to good data is difficult, and epidemiologists and public health workers in Native American communities say they are often left in the dark because state and federal agencies limit access to the latest data.
The 2010 reauthorization of the Indian Health Care Improvement Act gave tribal epidemiology centers public health authority and required the federal Department of Health and Human Services to allow them to access and use data and other protected health information that is routinely distributed to state and local officials. But tribal epidemiology center officials have told government investigators that this often isn’t the case.
By July 2020, COVID-19 infection rates among American Indians and Alaska Natives were 3.5 times higher than non-Hispanic whites. While data access issues existed before the pandemic, alarming infection and death rates in Native American communities have highlighted the importance of facilitating data sharing so tribal health leaders and epidemiologists have the information they need to make life-saving decisions.
Tribal health officials have repeatedly argued that data denial has hindered their response to disease outbreaks, including delayed contact tracing during the pandemic and the ongoing syphilis outbreak in the Midwest and Southwest.
“We’re being blindsided,” said Meghan Curry O’Connell, public health director for the Great Plains Tribal Leaders Health Commission and a native Cherokee. While there has been some improvement in data sharing in recent years, she said it’s not enough.
Federal investigators and tribal epidemiologists have documented numerous obstacles that prevent state and federal public health information from reaching tribes, including confusion over data-sharing policies, an inconsistent process for requesting information, poor-quality or outdated data, and strict privacy rules for sensitive data on health issues such as HIV and substance abuse.
Limited capacity for tribes and tribal epidemiology centers to monitor and respond to public health issues makes it difficult to address historic health disparities: American Indian and Alaska Native life expectancy is at least 5 1/2 years lower than the national average.
Sarah Shoebrooks and her colleagues at the Great Plains Tribal Epidemiology Center are among those blinded by walls of bureaucracy. Shoebrooks says the lack of data was especially pronounced during the pandemic, when her team couldn’t access public health data available to other state and local public health workers. Her team was forced to manually record positive cases and deaths in the 311 counties the center serves in North Dakota, South Dakota, Nebraska and Iowa.
Shoebrooks, the center’s director of data coordination and chief epidemiologist, estimates that her staff spent more than a year digging through unique data sets to inform tribal leaders making decisions about closing reservations or asking residents to self-isolate during the pandemic.
She said the process has been frustrating and stressful, especially because it has taken away time her team could have spent saving lives in the communities they serve. Tribes in her area are doing “amazing things,” she said, including providing food and shelter to people who need to isolate.
“But they had to do it all without real-time knowledge of what was going on around them,” Shoebrooks said.
While contact tracers who work for the state government cover the Native American population, it’s important that people in the community take the lead, Shoebrooks said. Tribal officials are best placed to move around the communities and meet people where they are.
Shoebrooks said state contact tracers have relied on calling and texting patients, but that’s not always the most effective method: Tribal members are a hard community for state officials to reach, and if they don’t respond, they move on to the next case.
“A lot of cases were just being closed,” Shoebrooks said.
In 2022, the Government Accountability Office released a report confirming concerns raised by tribal health officials, including the Great Plains Tribal Epidemiology Center. Federal investigators found that health officials working to address public health issues in Native American communities were doing business with federal agencies that lacked clear processes, policies and guidelines for sharing data with tribal officials.
As one example, officials said that as of November 2021, 10 of the 12 tribal epidemiology centers in the U.S. had access to Centers for Disease Control and Prevention COVID data, but not all had complete data. Some centers had access to case surveillance data, which includes information on positive cases, hospitalizations and deaths. Only half said they also had access to HHS COVID vaccination data.
The GAO report also found that officials responding to data requests from the Department of Health and Human Services, the CDC and the Indian Health Service did not consistently recognize tribal epidemiology centers as public health authorities. Center officials told federal investigators they were sometimes asked to request needed data as outside researchers or through the Freedom of Information Act.
The report recommended the agency make several changes, including accommodating tribal epidemiology centers as required by law and clarifying how agency staff should handle requests from epidemiology centers.
HHS officials agreed with all of the recommendations, and the department will consult with tribal leaders in the fall of 2022 and release a draft policy this year clarifying what data centers will be able to access.
Some tribal leaders say the proposal is a step in the right direction but incomplete. Jim Roberts, senior executive liaison for intergovernmental relations at the Alaska Native Tribal Health Association, a nonprofit that provides health care and assistance to Alaska tribes, said the GAO report focuses on tribal epidemiology centers, which operate separately from tribal governments and each serve dozens of tribes across their regions. The report does not include tribes, who as sovereign nations have a right to the data, Roberts said.
HHS officials declined requests for interviews, but Principal Deputy Assistant Secretary for Public Affairs Samira Barnes said the department is considering feedback and recommendations it received from tribal leaders during consultations on the draft policy and will continue to consult with tribes before making a final decision.
Strengthening federal policies on data sharing among tribes would also help improve relations with states, Roberts said. Tribal officials say the problems they experience at the federal level are often more severe in states that don’t legally recognize tribes or tribal epidemiology centers as authorized recipients of data.
The Northwest Tribal Epidemiology Center, which works on behalf of tribes in Washington, Oregon, and Idaho, had data use agreements with the Washington and Oregon governments before the pandemic hit, giving them immediate access to near real-time data on emergency room and other health care visits to aid in the response. Center staff used this data to monitor suspected COVID-related visits that could be shared with tribal leaders.
It took the center seven months to get COVID surveillance data from the CDC and about nine months to get HHS vaccination data after vaccinations became available, said Sujata Joshi, director of the Northwest Center’s Data Improvement and Enhancing Access project. Even after getting the information, there were concerns about its quality, she said.
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