Making informed public health decisions is challenging without access to reliable data. Epidemiologists and public health workers serving Native American communities often find themselves at a disadvantage due to restricted access to up-to-date information from state and federal agencies.

The reauthorization of the Indian Health Care Improvement Act in 2010 granted tribal epidemiology centers authority in public health and mandated that the Department of Health and Human Services provide them with access to data and other protected health information typically shared with state and local officials. However, tribal epidemiologists have reported frequent difficulties in accessing this crucial information.

By July 2020, American Indians and Alaska Natives had a COVID-19 infection rate 3.5 times higher than that of non-Hispanic whites. While data access issues existed before the pandemic, the high infection and death rates in Native American communities have highlighted the need for better data-sharing to enable tribal health leaders and epidemiologists to make critical decisions.

Tribal health officials have consistently reported that restrictions on data access hinder their response to disease outbreaks, including slowing down contact tracing efforts during the pandemic and addressing a syphilis outbreak in the Midwest and Southwest.

“We’re being left in the dark,” said Meghan Curry O’Connell, the chief public health officer for the Great Plains Tribal Leaders’ Health Board and a member of the Cherokee Nation. While data sharing has improved somewhat in recent years, it remains insufficient, she added.

Federal and tribal investigators have identified numerous barriers to accessing public health data, such as unclear data-sharing policies, inconsistent request processes, low-quality or outdated data, and stringent privacy rules for sensitive health information like HIV and substance misuse.

These limitations complicate efforts to address long-standing health disparities. For example, life expectancy among American Indians and Alaska Natives is at least 5.5 years shorter than the national average.

Sarah Shewbrooks and her team at the Great Plains Tribal Epidemiology Center experienced these barriers firsthand during the COVID-19 pandemic. They struggled to access public health data available to other state and local agencies and had to manually track cases and deaths across the 311 counties they serve in North Dakota, South Dakota, Nebraska, and Iowa.

Shewbrooks estimates her team spent over a year compiling their own data to guide tribal leaders in making critical decisions about public health measures.

Shewbrooks described the process as frustrating and stressful, as it diverted time away from direct efforts to save lives. Despite the challenges, tribal communities in their region took significant steps to support those needing to quarantine.

State contact tracers do engage with Native American populations, but Shewbrooks emphasized the importance of community-based contact tracers who understand local contexts and can more effectively reach individuals.

In 2022, the Government Accountability Office confirmed concerns raised by tribal health officials, noting that federal agencies often lack clear processes and guidelines for sharing data with tribal authorities. For instance, as of November 2021, 10 of the 12 tribal epidemiology centers in the U.S. had some access to CDC COVID-19 data, but not all had complete data sets. Only half had access to vaccination data from HHS.

The GAO report also found that staff at HHS, the CDC, and the Indian Health Service did not always recognize tribal epidemiology centers as public health authorities. These centers were sometimes asked to request data through mechanisms intended for outside researchers, such as the Freedom of Information Act.

The report recommended that agencies adhere to legal requirements for data sharing with tribal epidemiology centers and clarify how staff should handle such requests. HHS officials agreed with the recommendations and, after consulting with tribal leaders in fall 2022, published a draft policy in 2023 to clarify data access.

Some tribal leaders believe the proposal is a positive step but still lacks completeness. Jim Roberts from the Alaska Native Tribal Health Consortium pointed out that the report focused on tribal epidemiology centers, which operate separately from tribal governments. He argued that tribes, as sovereign nations, also have a right to their data.

HHS officials declined an interview but indicated they are reviewing feedback on the draft policy and will continue consulting with tribes before finalizing it.

Stronger federal policies on data sharing could also improve interactions with state governments, which often have laws that may not recognize tribes or tribal epidemiology centers as eligible for data access.

The Northwest Tribal Epidemiology Center, which serves tribes in Washington, Oregon, and Idaho, benefited from pre-pandemic data-use agreements with state governments. These agreements provided near real-time data on emergency room and other health facility visits, aiding their response efforts. However, it took seven months to gain access to CDC COVID-19 surveillance data and about nine months to receive vaccination data from HHS. Even after gaining access, concerns about data quality remained, according to Sujata Joshi, director of the center’s Improving Data and Enhancing Access project.