The state, the Tribes, NPAIHB, and IHS have a responsibility to meet the public health needs of the communities we mutually serve. Capturing these commitments on paper in a way that respects Tribal sovereignty and Tribal data sovereignty makes them more durable.
The nation-to-nation relationship is something to hold dear and to defend. It’s easy to push ahead and sign a data sharing agreement that includes language that doesn’t uphold Tribal sovereignty or data sovereignty, because you really want certain data. But it’s so important to remember the people we serve and to thoughtfully consider the implications of doing this. It’s not a good idea to sign any agreement that doesn’t honor the nation-to-nation relationship that the federal government has with Tribes. There are other, more ethical ways of obtaining data.
I tell people that I might work for the University, but I am Native first. I let them know that I work for the benefit of the Tribes, not only in what I say, but what I do. People know that if the research doesn’t have a strong benefit for the Tribes, I will not ask them to participate. People deserve to have a clear understanding of how participating in research will benefit the Tribe and future generations.
We saw that Tribal members were misclassified very frequently. For some Tribal communities the state cancer registry misclassification rate was 80%. That’s really high. When we made changes, it made a BIG impact. For example, some Tribal leaders had thought that diabetes was a higher priority to address, but the reports actually showed that cancer was impacting their people more. After that, more leaders wanted their communities to have access to this quality information.
Tribes were receiving COVID-19 data 2 weeks or more after a case investigation occurred. Two weeks is far beyond the time that leadership can effectively respond and protect their residents and visitors... For the county, honoring Tribal sovereignty and Tribal data sovereignty helped open up lines of communication and trust. We have increased Tribes’ access to data, and we have also increased the depth and breadth of data the Tribes are willing to share with the county.
Know that you are in the driver’s seat as a sovereign nation. You have control over who you work with and how you work with them. If what you hear from a researcher doesn’t gel with the values of your community, listen to your intuition… You must know your rights and be willing to exercise your authority when partners do not respect your sovereignty and care for your community’s data.
NativeDATA is an initiative of IDEA-NW – a project working to improve data and enhance access for Tribes in the Pacific Northwest and across Indian Country.