“Having quality data makes a huge difference” effused Noel Pingatore from her sunny office in Sault Sainte Marie, Michigan. As the Director of Health Education and Chronic Disease at the Inter-Tribal Council of Michigan (ITC) and an ITC staff member for over 25 years, Noel has seen firsthand the benefits of working alongside Tribal leadership and other partners to improve Tribal data quality. Through its successful cancer data linkage project, ITC and partners were able to correct racial misclassification of Tribal members in the state cancer registry, report more accurate health information to Tribal leadership, and positively impact the number of Tribal community members who received cancer screenings.

In the early 2000s, it became apparent that state cancer registries- where cancer statistics are housed for each state- tended to underestimate the burden of cancer for American Indian and Alaska Native (AI/AN) people. Oftentimes, this was because AI/AN people were misclassified as “white” by their doctors. The result was that when state and federal cancer statistics were reported, Tribal leaders did not have accurate information from which to make important policy and programmatic decisions.

Respecting Tribal sovereignty first and foremost

To address this, ITC staff presented to the Tribal health directors and leadership of the 12 Tribes that comprise ITC about the possibility of using a data improvement process, called data linking. “We proposed using a process that involved working with a representative from the state, who would bring data from the state cancer registry on a hard drive. Within a Tribal building ITC, the state representative, IHS representative, and Tribal staff would collaboratively cross reference the state’s cancer data with Tribal enrollment data using a software, called Link Plus. “When we would find that a Tribal person was misclassified, we would correct it in the state registry and note it for the Tribe as well,” said Noel. “Melissa Jim was also phenomenal. She had been doing some of this critical work at IHS before we got started. Melissa was able to teach us about effectively using Link Plus and was an awesome support. Improving the accuracy of the registry’s data was truly a team effort.

After answering Tribal leaderships’ questions and obtaining approvals from two Tribal councils to proceed, ITC worked to establish data sharingData sharing includes obtaining and sharing data.  agreements with each Tribal community and the state. Their proposed linkage process was also reviewed and approved by the state IRB and individual Tribal governments. Going through this process of engaging the appropriate Tribal leadership early on, obtaining the correct approvals, and making thoughtful data sharingData sharing includes obtaining and sharing data.  agreements, were important to the data linkage project’s successes.  According to Noel, not only did it help build trust among partners, it also helped partners co-create procedures that protected individuals’ private health information, including defining who could be in the room while Tribal enrollment data was being shared and requiring that everyone present sign data confidentiality agreements. Importantly, thier process also respected and upheld Tribal data sovereigntyis the right each Tribe has to govern the collection, ownership, and application of its own data. It derives from Tribes’ inherent right to govern their peoples, lands, and resources. Principles of Tribal (or Indigenous) data sovereignty can apply to data on American Indian and Alaska Native people off Tribal lands..

Linkages Begin and the Truth is Revealed

According to Noel, when “[ITC and partners] started linking to the state cancer registry in 2006, they “saw that Tribal members were misclassified very frequently. For some Tribal communities the state cancer registry misclassification rate was 80%.” With rates like that it was difficult for Tribal council leadership and Tribal health directors to use state data to inform Tribal health priorities, policies, and programs. After the data was corrected though, ITC and partners, including the Michigan Public Health Institute and the University of Michigan Cancer Epidemiology Education in Special Populations program, were able to generate accurate reports tailored to the two participating Tribes on their own cancer statistics. Of this Noel said, “we were conscious of consistently reporting back data to Tribal leaders. We presented at different conferences and meetings. We also shared information with community members through articles in Tribal newspapers and newsletters.”

Building relationships with the state

At the same time, Noel began intentionally cultivating ITC’s relationship with individuals within the state office who worked with the cancer registry. “I wanted the staff from the state who were working with us to know the vital impact of the work they were doing. So I made visits to share summary reports and bring small gifts from Tribal communities who were impacted by their work. I wanted them to know just how important their role in all of this was,” said Noel. Soon they developed a trusting relationship, and the staff would pull data for ITC, within hours, if needed.

Other Tribal leaders step forward

After learning about the high rates of misclassification and possibility for resolving this issue, four other Tribal leaders stepped forward requesting that their community’s data be linked too. According to Noel, “some Tribal leaders had thought, for example, that diabetes was a higher priority to address, but these reports actually showed that cancer was impacting their people more. After that, more leaders wanted their communities to have access to this quality information… When graduate students weren’t available to support these efforts, we partnered with the Michigan Public Health Institute to keep up with the growing demand for linkages.”

After more Tribes signed on and obtained more accurate data about their individual communities and the larger impact of cancer on AI/AN people in the state, ITC supported interested Tribes by offering technical assistance and training to clinical staff on evidence-based practices for screening and detecting cancers. Knowing that earlier diagnosis for cancers often means better outcomes, they worked with clinics to improve EHR cancer screening reminders and collaborated with a local partner, Spectrum Health, to offer screening via a mobile mammography van.

Cancer screening rates increase

After several years their efforts paid off. Noel and her partners celebrated as they saw cancer screening rates increase by 30-60% across several Tribal communities. Of this Noel commented, “We had long-established relationships with the Tribes through working together for over 50 years, since the inception of ITC, to establish services and build programs. In this case, we drew on those strong bonds and our mutual respect for each other, and we built new partnerships with the state and academic and community programs, which allowed us to provide accurate data to Tribal leaders, so they could create paths for delivering high-quality healthcare services to their people.” Now says Noel, “tribal leadership expect these reports.”

To learn more about building strong partnerships, data sharingData sharing includes obtaining and sharing data.  agreements, and engaging with data sharingData sharing includes obtaining and sharing data.  in ways that respect Tribal data sovereigntyis the right each Tribe has to govern the collection, ownership, and application of its own data. It derives from Tribes’ inherent right to govern their peoples, lands, and resources. Principles of Tribal (or Indigenous) data sovereignty can apply to data on American Indian and Alaska Native people off Tribal lands., check out those respective portions of the toolkit.