Indigenous Data Sovereignty: A Path Toward Equity in Pima County

In the 1950s, federal policies like the Indian Relocation Act coerced Native communities off reservations with unfulfilled promises of housing, education, and jobs in nearby cities. While the act touted opportunities, it led to the dissolution of federal support for reservations, leaving urban Native Americans to face high poverty rates, job discrimination, and limited opportunities.

For the more than 70% of American Indians and Alaska Natives (AI/AN) living in urban areas, these harmful policies continue to exacerbate inequities. Despite enduring significant challenges, Native communities seldom have a say in or control over the policy decisions affecting their lives, or the data that drives these decisions.

To address this gap, Native communities in Pima County, Arizona, are stepping up to reclaim ownership of their data and reshape the policies that affect them.

Last year, Partners In Health United States (PIH-US) and the Tucson Indian Center (TIC), which offers health and other essential support services to urban Indigenous residents of Pima County, co-launched the Pima County Indigenous Health Equity Coalition to oversee the development of a Native-led and owned data ecosystem. Traditional research and data collection methods often exploit Native communities, leading to inaccurate data that results in underfunding, limited access to services, and increasing health and poverty issues for Native populations, both on and off reservations. 

While TIC already collects data on their programs, they don't currently have a unified system to fully understand and track the breadth of community strengths and needs. This new coalition will create an ecosystem that captures the urban Indigenous community's assets and needs, while also developing a shared language and vision to guide collaboration on database design, data protection, and analysis, connecting the community's platform, processes, and people. By building on traditional knowledge systems and transferring power and decision-making about data systems back to the urban Indigenous community, TIC and PIH-US aim to help shape policies and increase public funding allocations aligned with the needs of the Indigenous community. 

“In current data sets, there is often a disconnect between definitions and meanings of words. How [Indigenous] communities define health might be different than the general population,” said Dylan Baysa, Social Services Director at the Tucson Indian Center. “The data ecosystem will enable us to develop shared language and bridge the gap. We are creating something that is not only for the Native community but informed by them.” 

More accurate insights will help Dylan and his team improve access to primary care, behavioral health, and social support services for off-reservation Indigenous community members in Tucson. The data from the ecosystem will also be used to inform long-term collaboration with local government partners, including the Pima County Health Department (PCHD).

Since 2020, PIH-US has collaborated with PCHD and TIC to improve health outcomes by enhancing community engagement and creating programs that center equity and are data-driven. With PIH-US support, PCHD established an Office of Policy, Resiliency and Equity and hired a dedicated Tribal Liaison. Similarly, PIH-US is supporting TIC to establish an advisory council, which brings together diverse stakeholders to guide the creation of the data ecosystem and ensure the principles of Indigenous data sovereignty are upheld.

And this is just the beginning. 

“The health department already collects data on Native Americans, but there are gaps between the data they are collecting and what might be needed to inform policy,” explains Dylan. “By bridging the gap between the community and the health department, we’ll be able to collectively align with community priorities and use this information to develop legislation and policy.”

Intentional redistribution of power and inclusion of the community narrative are necessary to meaningfully affect change. Cross-sector collaborations like those in Pima County can yield improvements in health outcomes that no single organization or institution would have been able to achieve on its own. By centering community members’ lived experience, agreeing on shared priorities, and pooling resources, knowledge, and skills, organizations can build a collaborative infrastructure that tackles both immediate and long-term inequalities in the region.

“Having community members be a part of the community advisory council and giving them a seat at the table with the health department, I am hopeful we will build trust and start to repair some of this historical trauma,” explains Dylan. “I think [this work] is a huge step toward the future.”