How to Get Tribal Data Sovereignty & Appropriately Work With Indigenous Communities

Gathering, securing, and using data affects our lives in profound ways. Data involves everything from national statistics and voter registration to social media posts and shopping preferences. An individual's or organization's data can improve their well-being or be used detrimentally.

Native Americans have struggled against injustice and disparities for generations. Appropriate data use is one important way to improve the lives of marginalized people and indigenous communities. This how-to guide explains tribal data sovereignty (TDS), why it matters when working with Native Americans, how to obtain TDS, and examples of how it has been done correctly and incorrectly in the past.

What Is Tribal Data Sovereignty (TDS)?

Tribes recognized by the United States federal government are sovereign nations. This means they can form their own governments and enact their own laws. Digital inclusion, data governance, and adequate data protections are part of effectively forming and maintaining a sovereign nation.

Data use has always been part of indigenous practices. Data could include any information or facts about tribal citizens, their land, resources, and culture. Native tribes would often preserve data through oral storytelling or pictographs.

Tribal data sovereignty involves the right of each native tribe or nation to govern its data. This would include collecting, owning, and using the data in ways that benefit their communities. Closely working with Native Americans is crucial when promoting tribal data sovereignty while providing each tribe with data protections.

Why Is TDS Important?

Indigenous people preserve their culture through the use of various data. Data can be utilized to sustain and advance individual and collective well-being in indigenous communities. There are several specific reasons why Tribal Data Sovereignty is important:

• Fill Data Gaps: Native people often have access to and understand missing data in ways that those outside the tribes do not. Giving them sovereignty to manage their own data can more effectively fill data gaps. Having complete and accurate data is necessary to provide supportive services, promote adequate funding, and elevate their status within cultural and government systems.
• Provide Supportive Services: Effective data use will enable better access to supportive services. This can only occur after addressing gaps in the data and understanding the data from the viewpoint of each tribe. Native American people sometimes struggle to be seen or heard due to logistical difficulties. These could include a lack of physical mailing addresses or inefficient broadband and internet services.
• Promote Adequate Funding: When data is incomplete or missing, native people may not receive the funds they need for various programs. Data must also be used correctly. When data protections are not implemented and data is misused, it can lead to underfunding for already marginalized communities.
• Elevate Status Within US Systems: TDS is important because data empowerment can improve a native tribe's relationship within the American power structure. When indigenous people have control over their data, they're empowered to make decisions that are in the best interest of their communities.
• Elevate Status Within Cultural Systems: Indigenous people aren't always given distinct categories in various polls or surveys. They are sometimes counted in categories designated as "other." TDS can bring attention to the problems facing native people and encourage other individuals and groups to help provide solutions.

How to Get Tribal Data Sovereignty?

Desi Small-Rodriguez, Ph.D., states, "I believe that I cannot be a good researcher and teacher without being a good relative."

She explains that developing positive relationships with Native Nations and organizations requires honoring the lived experiences of those in Indigenous communities. This includes closely working with Native Americans from these communities when obtaining and using their data.

Obtaining tribal data sovereignty is not an easy process. Take the following steps to effectively and respectfully obtain data while providing data protections for each tribe.

1. Research Treaties and Laws: Start by examining treaties and laws negotiated between Tribal Nations and the Federal government. This includes researching relevant court decisions and reference case laws.

2. Reference Tribal Consultations: The Department of Health and Human Services (HHS) provides documents and information regarding tribal consultation policies. Secretary's Tribal Advisory Committee (STAC) is the highest level and is composed of a Tribal representative from each of the Indian Affairs regions.

3. Study Various Resources: These should include Area Indian Health Boards that serve as a communication link between Native Tribes and the National Indian Health Board (NIHB). Tribal Epidemiology Centers (TECs) are also good resources.

4. Network Effectively: To maintain body sovereignty and data protections, it's important to include the right people at each step of the process. Reinforcing partnerships throughout the process is critical for ongoing success.

5. Connect Directly to a Tribe: It is often difficult to contact a tribe, but there are resources to help you get started. The United States Bureau of Indian Affairs maintains a Tribal Leaders Directory. As of January 8, 2024, there were 574 tribes recognized by the Federal government.

How Can TDS Protect Indigenous Communities?

TDS can help ensure that any research or program using data from members of a Tribal Nation will do so in a way that respects a tribe's culture and laws. Data-sharing agreements should be constructed and upheld in a manner that supports and benefits each tribe. It's also necessary to promote research and programs that are important to a tribe and to follow ethical principles for data sharing.

• Participatory and Equal Partnerships: Trained experts should engage in equal partnerships with all indigenous people and tribal communities. This means at least part of the community will participate in all aspects of conducting research and gathering data.
• Data Ownership: Researchers and tribes should negotiate fairly regarding the ownership and use of all data. This would involve clearly defining all data and the responsibilities regarding ownership.
• Follow Up Obligations: Ethically obtaining the data is not the end of the relationship between researchers and tribes. Researchers should provide the results of any research conducted using a tribe's data.
• Future Partnerships: Initial negotiations should clarify any long-term partnership with a tribal community. Researchers sometimes need to stay involved with the community after research is complete to sustain any benefits the tribe would receive.

Sometimes, it is beneficial for a tribe to have sole ownership over their data, while other times, researchers may maintain control of all data. In some cases, negotiating shared ownership of the data may be viable and beneficial. Each case is unique when respectfully working with Native Americans and providing data protections in the best interest of each community.

What Are Some Cases of Tribal Data Use?

An example of misuse of tribal data includes a genetic study focusing on the Havasupai Tribe. This study on genetics and diabetes, conducted by Arizona State University, resulted in the unauthorized use of blood samples for further research. Reusing blood samples ended in a lawsuit and the return of the samples to the tribe. Several other examples of data misuse have either caused harm to indigenous people or failed to benefit them.

New Zealand (also known as Aotearoa) provides an example of promoting and protecting tribal data sovereignty. The Māori in mainland New Zealand are an Indigenous Polynesian community. Economic development for the Māori is now a crucial part of the national economy. Science reports that the government in Aotearoa has heavily invested in data sharing and integration. This has helped accurately count the Māori people while promoting their data rights and innovation within their community.

Televeda is working closely with Tribal entities and stakeholders to set a high standard and model for how to appropriately work with Indigenous Communities.

Televeda Supports Tribal Governments & Communities

Televeda is a public health platform that creates and supports virtual communities to promote healthy socialization. It provides accessible live-streaming and simple, cloud-based infrastructure to increase social engagement for vulnerable communities. Televeda's human tech support, customizable calendars, and integrated data reporting offer an end-to-end solution for all virtual and hybrid activities.

Televeda's Hero's Story Project is an example of how its services have helped individuals and organizations. Hero's Story is a community-based project developed to reduce isolation and offer healing for tribal communities and American Indians and Alaska Natives (AI/AN) veterans. Hero's Story provides culturally appropriate resources and interventions to support mental health. The community-led platform provides evidence-based interventions with strong digital infrastructure and broadband access.

Televeda has been instrumental in helping veterans and tribal communities in several ways, including the following:

• VA Mission Daybreak Award: The Department of Veterans Affairs received over 1300 submissions for suicide prevention from various organizations. Televeda was one of the two first-place winners.
• Roger That: Televeda supports veterans in remote or rural areas through a partnership with the Arizona Department of Veteran Services. Televeda connects veterans through a mobile internet kit for native tribes throughout Arizona.
• Partnership with Black Hills American Indian Center: Televeda & Black Hills American Indian Center for Public Health are partnering on VA project for research on suicide prevention. The project is working on important thesis: that community based evidence of traditional healing practices like storytelling & talking circles are an effective modality for suicide prevention.  Read more here.

Televeda works with each community individually, accessing their specific needs.

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