Established in 2003, the Great Plains Tribal Epidemiology Center (GPTEC) serves the 17 federally recognized tribes and one tribal service unit in North Dakota, South Dakota, Iowa, and Nebraska. The goal of GPTEC is to provide epidemiological services to these tribal communities, including providing public health data and reports to help tribes prioritize health needs.
GPTEC has, however, for years struggled with a lack of access to data that is representative of the tribes it serves. The reason for this is the systemically racist public health authority. Public health authority refers to an agency or governmental body’s legal ability to access health data for use in public health practice. Tribes are public health authorities due to their status as sovereign nations. Tribal epidemiology centers’ public health authority status was established through the Affordable Care Act in 2010. The Problem and Solution Since GPTEC’s founding, gaining access to anything besides publicly available data involved months and sometimes years of relationship building. GPTEC had to engage with different positions within each state Department of Health and Vital Records and build relationships one by one. Then that person hopefully became GPTEC’s champion for data sharing, and if state law allowed, they began to share. Even then, the data shared was often limited. The data might be given as a five-year average instead of counts by year, for example. This data sharing was often tenuous, as staff turnover more than once left GPTEC starting over, building relationships from the ground up again. One state also underwent a complete restructuring, with the new department deciding that the data that had previously been shared could no longer be shared at all.
While this was problematic before 2020, the true urgency of the issue became clear in 2020, when the COVID-19 pandemic started. Without an established data flow, GPTEC was left spending four or more hours per day, every day, manually entering COVID-19 infections and deaths by county for every county (311 total) in the four-state service area using secondary data sources like the Johns Hopkins COVID-19 tracker. This data, however, was not race-specific, so its use was limited. Eventually, the Public Health Emergency declarations opened direct data sharing with most states, but they still suppressed small numbers in some cases, and some states still refused to share race-specific county data, despite tribal and GPTEC public health authority status. Public health systems were more stressed than ever, and tribes were some of the most vulnerable populations, yet they were left with some of the fewest resources. Some states recognized this and started working directly with tribes, providing them with data extracts of positive cases they could use for contact tracing. Other states did not. It was becoming clear that a sustainable data-sharing solution was vital. This was something that had been discussed before but became a topic of serious discussion during a meeting with South Dakota’s State Epidemiologist and other state program leadership in July 2021. The State Epidemiologist agreed that a more defined data-sharing partnership was needed, however, the State Epidemiologist did not have the final say regarding data outside of their positional purview, including sexually transmitted disease data. The need for this agreement was made even clearer as the pandemic started to formally wind down and the Public Health Emergency ended because data sharing abruptly stopped with multiple states.
With tribes and GPTEC barely being able to take a breath, a new epidemic was simmering, especially in South Dakota. Reports of high rates of syphilis and congenital syphilis started coming in and GPTEC was hearing many of the affected persons were American Indian and Alaska Native. This epidemic came with no public health emergencies, however, and little public attention. GPTEC started requesting syphilis data from the state departments of health and was repeatedly denied. Meanwhile, the cases kept growing and growing and it was becoming clear the majority were Native Americans. The states repeatedly refused to give line-level identifiable data that would allow GPTEC or tribes to perform contact tracing or provide treatment. To try to move a Data Sharing Agreement forward, the South Dakota State Epidemiologist and their team met for a full day with the GPTEC team in the summer of 2022 to go over a draft of a Data Sharing Agreement (DSA). The two teams went over the agreement, line by line, discussing and changing the language to ensure the product they produced would have the highest likelihood of moving through both organization’s legal departments as fast as possible. Despite these efforts, the process moved slowly, all while the syphilis epidemic escalated and tribes and GPTEC were still left with no data.
By March 2023, with local resources exhausted, the Great Plains Tribal Leaders’ Health Board, at the request of GPTEC, contacted the Centers for Disease Control and Prevention (CDC) and requested Epidemiologic Assistance (Epi-Aid). To GPTEC’s knowledge, this was the first time a Tribal Epidemiology Center had requested and received an Epi-Aid. For the CDC to be able to do their work, however, they would need identifiable data on syphilis from the states. GPTEC requested that the CDC abide by “no data about us without us”, meaning that if GPTEC didn’t get access to the data, the CDC did not either. By the time the CDC arrived in South Dakota in July 2023, one state had provided full access almost without question. South Dakota provided access within days of the CDC’s arrival but attempted to block access for GPTEC to some identifiable case investigation data. After much discussion, the CDC eventually agreed to back GPTEC and not access any syphilis data unless GPTEC was also given access. GPTEC was ultimately granted access and activities proceeded. A third state sent data late into the first week, and the final state did not send data until October, delaying the Epi-Aid Final Report by two months. While all this went on, the DSA with South Dakota continued to move back and forth between the Department of Health and GPTLHB legal teams.
Finally, on February 15, 2024, the agreement was finalized. The agreement gave GPTEC an unprecedented level of access to South Dakota data. Once activated, it allowed a near real-time feed of all reportable conditions for American Indians and Alaska Natives, and aggregate data on non-native persons. The only thing stopping the proverbial flip of the switch is GPTEC finalizing its infrastructure to ensure the data is housed securely. This DSA is the culmination of years of hard work and will propel GPTEC and the South Dakota tribes forward in their disease surveillance and response efforts and allow decision-makers a better understanding of the health of their communities. GPTEC hopes this win will set the precedent for the signing of similar DSAs in North Dakota, Iowa, and Nebraska.
THESIS intern students at the CDC Showcase in Atlanta, Georgia.
