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A Data Sharing Resource for Native Peoples and Organizations

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What is NativeDATA?

NativeDATA is a free online resource that offers practical guidance for Tribes and Native-serving organizations on obtaining and sharing health data. We also offer data sharing success stories, as well as tips for those seeking to respectfully collaborate with Tribes and Native-serving organizations.

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Here You Will Find Expert Advice On

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The Defining Your Goal icon.

Defining Your Goal

Is obtaining data the best choice?

The Sharing Data icon.

Sharing Data

Is sharing your data a good idea?

The Building Relationships icon.

Building Relationships

Keep partnerships strong

The Obtaining Data icon.

Obtaining Data

Know your rights

The Getting Approvals icon.

Getting Approvals

Buy-in is key

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How to Use This Resource

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There is not a right or wrong way to use this resource. Select the topic that makes sense for you and learn at your own pace.

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Defining Your Goal Sharing Data Building Relationships Obtaining Data Getting Approvals

Defining Your Goal

Defining Your Goal

Sharing Data

Sharing Data

Building Relationships

Building Relationships

Obtaining Data

Obtaining Data

Getting Approvals

Getting Approvals

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Our Stories are Powerful

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Read these stories to learn important lessons about data sharing and to get inspired.

A portrait headshot of Dr. Richard Leman.

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.

Dr. Richard Leman

Tribal Epidemiology Liaison & Public Health Physician
Oregon Health Authority
Read Dr. Richard Leman's Story
Headshot of Ian Blake.

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.

Ian Blake

Biostatistician
Alaska Native Epidemiology Center
Read Ian Blake's Story
Lancer teaching students.

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.

Lancer Stephens

Associate Professor
University of Oklahoma
Read Lancer Stephens's Story
Mobile Mammography Van 8-9-21

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.

Noel Pingatore

Director of Health Education and Chronic Disease
Inter-Tribal Council of Michigan
Read Noel Pingatore's Story
Peery White

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.

Peery White

Tribal Liaison
San Diego County
Read Peery White's Story
A portrait headshot of Victoria Warren-Mears.

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.

Victoria Warren-Mears

Director
Northwest Tribal Epidemiology Center
Read Victoria Warren-Mears's Story