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How I pivoted after facing roadblocks while data reporting in Indian Country

Topics in Health: Lessons From The Field

How I pivoted after facing roadblocks while data reporting in Indian Country

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(Photo via Jenna Kunze)
(Photo via Jenna Kunze)

It is notoriously difficult to access recent data on Indian Country. That’s in part because state and federal agencies do a poor job of collecting and reporting Native-specific data, resulting in a phenomenon termed “data genocide.”

We saw it during the COVID-19 pandemic, where certain states — including New York — grouped Native populations into a category marked as “other,” despite Indigenous people suffering disproportionate death rates from the virus.

We saw it during the 2020 census, where Native Americans and Alaska Natives living on reservations were among the most undercounted racial groups — census counters missed almost six of every 100 Native Americans.

The lack of data is consequential. It amounts to a corresponding lack of resources to address the disproportionate health issues that plague Native American and Alaska Native communities today.

These barriers are complicated, too, by legitimate feelings of distrust among many Native communities of data collectors, who have historically stolen Native American human remains and artifacts to study; persist with extractive data collection methods; and continuously leave Indigenous communities out of the conversation.

A dearth of data on Indian Country was a motivating factor behind my data fellowship proposal to create and distribute a survey, in partnership with Rosebud Oyate tribal members in South Dakota, that would illustrate inherited health impacts passed down from Indian boarding school survivors to their descendants. 

The data, we imagined, could be used as a tool for the tribe to show measurable health impacts from the U.S. government's nearly 200-year assimilation policy of boarding schools. It could be used to enumerate Rosebud’s specific tribal needs for future budgetary requests. Maybe it would illuminate a need for more federal funding to support a bolstered diabetes program, or a reservation-wide language revitalization program, or additional staff at the youth suicide prevention program, or a new gymnasium, or more cultural programming in school.

“Literally everything that’s systematic to the Native American stems from the boarding schools that we came from,” said Christopher Eagle Bear, a 23-year-old member of the Rosebud Sicangu Oyate tribe. “It would help to show that on paper.

For the project, I partnered with young adults from the Sicangu Youth Council. I got a letter of support from a tribal council member, as well as the tribal president. We worked together, along with various experts across Indian Country, to develop a written survey and distribution plan. I made an initial trip out to Rosebud to connect with my sources and build rapport before beginning the boot-on-the group-survey work. After that initial trip, I wrote an article explaining my project as a precursor to my second visit. Despite a few months of COVID delays, the project was set in motion.

We hit a significant roadblock when a tribal member who had read my precursor article got in touch. They were concerned about my work, and, ultimately,  after consulting with the tribal attorney and various council members, it was determined that I should wait until an institutional review board was in place at the tribe. 

Ultimately, given my already delayed timeline from COVID, I pivoted the project. Instead of collecting our own data, I relied heavily on narrative storytelling and the preexisting data to follow through on my three-part series.

Here’s what I learned in the process:

You don’t always have to reinvent the wheel: While the data I used wasn’t as new or perhaps as impactful as I originally imagined it would be, it still served as the branches that my narrative upon. You don’t always have to reinvent the wheel, or create your own data.

Work with tribes that already have an Institutional Review Boards in place: If you are intending to do data collection, this will protect both the tribal citizens, as well as yourself. Institutional Review Boards review research proposals to determine if ethical principles are in place to protect human subjects. An IRB has the authority to approve, disapprove or require modifications to projects.

Defer to Native experts for best practices: The Urban Indian Health Institute, a Tribal Epidemiology Center, has created a comprehensive guide for methods to collect, analyze, and present data on Alaska Native and Native American populations that are grounded in Indigenous values. I also ran my survey by Native academics and practitioners who had done some similar work for feedback and suggestions.

Prioritize relationship building: I’m most proud of the rapport I was able to build with the sources I worked with for this project. I didn’t jeopardize those relationships by pushing a survey that a powerful tribal member was against.

Pivoting isn’t the same as giving up: Just because this survey didn’t work out for this project doesn’t mean that it never will. When an IRB is in place with the tribe, I will have the relationships, framework, and continued buy-in from many tribal members to bring a proposal forward again. As for my project, I was still able to produce three longform narrative pieces that followed each of the surviving generations of the boarding school era — survivors, their children, and their children’s children — through the lens of intergenerational trauma and resiliency. 

Sometimes general data is better than no data: I relied heavily on non-racially specific data. It’s not ideal, but I felt it went further to illustrate the points of my reporting than solely relying on interviews.

If you’re dealing with Indian Health Services, request data ASAP. Like, yesterday. The Indian Health Service — the federal agency that delivers health services to members from all 574 federally recognized tribes — is severely underfunded, and record requests can take months. My own records request took nine months and, in the end, I was told that IHS did not have the basic data I was seeking.

Respect tribal sovereignty: Above all, respect that tribal nations are sovereign, and treat their information as such. Ensure that tribes have access to and ownership of their data, and that they approve of how you intend to use it for your reporting. 

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