A Historic Data-Sharing Agreement Affirms Tribal Authority and Aims to Improve Public Health

Overview

Diseases do not recognize borders, but the laws, regulations, and systems governing critical public health data often do. Improving how data is shared across different jurisdictions—including state and Tribal governments—better prepares public health departments to understand and respond to disease outbreaks and other public health issues while advancing the unique issue of Tribal data sovereignty, the right of a Tribal nation to collect and manage its own data.¹

As sovereign nations, Tribes exercise inherent public health authority. This authority is recognized in federal law.² They can exchange public health data for numerous purposes—such as tracking outbreaks, improving understanding of population immunization rates, and evaluating public health programs—just like the federal and state governments.³ However, Tribes often face numerous roadblocks accessing public health data that affects Tribal jurisdictions but is held by states. These roadblocks can include state systems, laws, and policies designed in such a way that they act as barriers for Tribal data-sharing and in conflict with the principles of Tribal data sovereignty. Other challenges include misunderstandings about Tribal public health authority and outdated technical systems resulting from federal underinvestment in Tribal entities.⁴

Research shows that a lack of trust can also be a major barrier for public health data-sharing.⁵ As experts have determined, building this trust is even more essential for Tribal and state jurisdictions.⁶ The process of building trust has been foundational in the Pacific Northwest, where progress was made with the January 2025 signing of a Tribal data-sharing agreement (DSA) between the Tulalip Tribes and the Washington State Department of Health (DOH).⁷ This first-of-its-kind agreement in the state grants Tulalip access to numerous DOH datasets at the same level as other public health authorities. Tulalip prioritized establishing access to the Washington Disease Reporting System, a surveillance system that tracks data on diseases in the state, including influenza, measles, rabies, and tetanus. Tulalip can use this data to better understand and coordinate responses to diseases within its Tribal health jurisdiction. The collaborative process leading to the Tribal DSA offers valuable lessons to other states and Tribes as they work to improve the exchange of public health data.

The Tribal DSA follows decades of related policy work, led by Tribes in Washington, promoting recognition of Tribal sovereignty in state laws and policies, improved communication with Tribal governments, and acknowledgement of the role of Tribes in Washington’s public health system.⁸ The 2019 creation of the Governor’s Indian Health Advisory Council, which aims to “address issues in [Washington’s] Indian health care delivery system,” has been an important driver of this historical work.⁹ While much of it was not fully implemented, it nevertheless laid the groundwork for the joint signing of the Tribal DSA. The COVID-19 pandemic—which underscored the fact that Tulalip (and other Tribes in the state) lacked access to the disease reporting system in which hospitalization, death, and other records were linked to laboratory reports—accelerated Tulalip’s efforts to establish the Tribal DSA, which provided data access while guaranteeing protections for their public health data.

What worked with Washington state and the Tulalip Tribes

As part of its public health data improvement project’s ongoing collaboration with states to examine promising data-sharing practices, The Pew Charitable Trusts interviewed officials from Washington, the Tulalip Tribes, and other parties involved with the Tribal DSA. Key takeaways emerged that other states could consider to improve their sharing of public health data with Tribal Nations.

1. Follow the Tribe’s lead

To increase the likelihood of a successful data-sharing partnership, Tribal voices need to lead the decision-making process for the negotiations. DOH interviewees noted that Tribes must have a seat at the negotiating table, to be filled at the Tribes’ discretion. This is a stark change from how DOH previously functioned; according to one DOH interviewee, the Tribal DSA with Tulalip “reminds [DOH] of the criticality” of keeping Tribal voices involved in public health decision-making throughout the state.

DOH staff taking part in Tribal consultations (formal government-to-government dialogues) and informal engagement (such as meetings and presentations) allowed for conversations that further advanced Tribal DSA negotiations and continued improving overall Tribal relations.

2. Embed Tribal members and advocates in all components of the negotiation process

A Tulalip interviewee noted that it was essential for DOH to have staff who understand Tribal data sovereignty and advocate for respecting this sovereignty in the department’s work. By hiring and collaborating with multiple individuals who were willing to listen to Tribal needs, the Tribal DSA negotiation process evolved to allow for difficult conversations about Tribal data sovereignty to take place. For instance, the participation of a DOH employee who is a member of a Tribal Nation constituted an additional voice advocating for Tulalip and advancing Tribal data sovereignty, ultimately helping to build trust in the ongoing discussions. As characterized during interviews, this embedding of Tribal members and advocates played an integral role in advancing the negotiations and helped to ease the distrust in DOH by Tribal Nations that had accumulated over decades.

3. Leverage diverse and trusted voices in the Tribal public health field

Previously, DOH’s standard DSA did not reflect Tribal co-ownership of the public health data or recognize Tribal data sovereignty. Before implementation of the Tulalip Tribal DSA, legal expertise and peer-reviewed publications from the American Indian Health Commission (AIHC), the Public Health Law Program of the Centers for Disease Control and Prevention, and Indian law professors played instrumental roles in informing the development of a Tribal DSA template and guiding DOH’s understanding of Tribal sovereignty and jurisdiction. A multiyear process facilitated by AIHC through the Governor’s Indian Health Advisory Council gave space for Tribes to have a say about the final version of the template, producing a model that allows individual Tribes to more easily establish their own Tribal DSAs with the state.¹⁰ Tulalip was then able to use this template as a springboard to the  version of the Tribal DSA signed with the DOH.

4. Build shared understanding

Before the legal specifics of the signed agreement with Tulalip were negotiated, the third-party experts at AIHC worked to build a shared understanding in DOH of what Tribal jurisdiction means and what Indian law says regarding public health data, which interviewees noted is often overlooked and misunderstood. AIHC described the need to hold discussions with DOH about how racism affects public health data exchange, including the role of institutional policies and practices. Previous AIHC work found that DOH has often treated Tribes differently from local health departments, under the misguided notion that they should have access only to their own Tribal member data rather than that of all those living in their Tribal health jurisdictions. There was also an assumption that overall access should be limited because Tribes lack the capacity or capability to handle the work.¹¹

According to interviewees, discussions helped DOH begin to determine how to confront historical and current wrongs to the benefit of all involved parties while increasing trust with its Tulalip partners. As other states look to improve their exchange of public health data with Tribal jurisdictions, they should take measures to build a collective understanding and approach to better advance Tribal data sovereignty.

As a byproduct of this engagement with Tulalip, Washington’s DOH changed how it operates and improved its Tribally related expertise. Tribal data sovereignty trainings for DOH staff—held as part of the terms of the Tribal DSA and led by an internal Tribal data team—have increased understanding of the topic and encouraged staff to apply these principles in their day-to-day work. All DSAs that the department executes now include an appendix on Tribal data sovereignty principles, demonstrating the state’s commitment to collaborating with Tribes and respecting their sovereignty. DOH continues to engage in activities to advance Tribal data sovereignty, including finalizing a Tribal data policy for the department outlining how this data should be used and shared.

Conclusion

The Tulalip Tribes and the state of Washington have advanced Tribal data sovereignty in the state’s broader health department practices—an important step in the pathway to improved data-sharing with additional Tribes—while guaranteeing that Tulalip has access to critical public health data. Over the long term, better data-sharing can allow Tribes to more accurately track diseases, understand populations at risk, and ultimately improve outcomes. Much work remains to strengthen state-Tribal relations. But the process leading to this Tribal DSA and the agreement itself offer valuable takeaways—about building trust and centering Tribal data sovereignty in DOH’s work—that other states can learn from as they advance public health data-sharing in their own jurisdictions.

Endnotes

1. Stephanie Carroll Rainie et al., “Data as a Strategic Resource: Self-Determination, Governance, and the Data Challenge for Indigenous Nations in the United States,” International Indigenous Policy Journal 8, no. 2 (2017): 1-29, https://ojs.lib.uwo.ca/index.php/iipj/article/view/7511.
2. Worcester v. Georgia, 31 U.S. 515, (1832), https://supreme.justia.com/cases/federal/us/31/515/.
3. Uses and Disclosures for Which an Authorization or Opportunity to Agree or Object Is Not Required, 45 CFR 164.512, Department of Health and Human Services, 2000, https://www.ecfr.gov/current/title-45/subtitle-A/subchapter-C/part-164/subpart-E/section-164.512.
4. Carrie Field, Sarah Price, and A.C. Locklear, “Barriers and Opportunities for Tribal Access to Public Health Data to Advance Health Equity,” The Journal of Law, Medicine, & Ethics 52, no. S1 (2024): 39-42, https://pubmed.ncbi.nlm.nih.gov/38995255/.
5. Willem G Van Panhuis et al., “A Systematic Review of Barriers to Data Sharing in Public Health,” BMC Public Health 14, no. 1 (2014): 1144, https://pubmed.ncbi.nlm.nih.gov/25377061/.
6. M. Nadeau et al., “Tribal Data Sovereignty: A Summary of Structures, Systems, Principles, Laws, and Related Resources with an Emphasis on New Mexico,” Indigenous Health Faculty Publications 29 (2024), https://commons.und.edu/cgi/viewcontent.cgi?article=1028&context=ih-fac.
7. Vicki Lowe et al., “Best Practices for the Exchange and Protection of Tribal Public Health Data: How Federal, State, and Local Governments Can Honor Tribal Data Sovereignty,” Journal of Law, Medicine, & Ethics 54, no. S1 (2026): 20-25, https://pubmed.ncbi.nlm.nih.gov/41986980/.
8. “Centennial Accord Between the Federally Recognized Indian Tribes in Washington State and the State of Washington,” Washington State Governor’s Office of Indian Affairs, https://goia.wa.gov/state-tribal-relations-centennial-accord/centennial-accord. “Institutionalizing the Government-to-Government Relationship in Preparation for the New Millennium,” Washington State Governor’s Office of Indian Affairs, https://goia.wa.gov/state-tribal-relations-centennial-accord/millennium-agreement/institutionalizing-government-government-relationship-preparation-new-millennium. State of Washington, Rev. Code § 43.70.512, Public Health System—Foundational Public Health Services—Intent (2023), https://app.leg.wa.gov/rcw/default.aspx?cite=43.70.512. State Washington, Rev. Code § 43.376.020, Government-to-Government Relationships—State Agency Duties (2025), https://app.leg.wa.gov/rcw/default.aspx?cite=43.376.020. State of Washington, Executive Order No. 25-10, “A New Foundation for Washington State’s Governmental Relations With Sovereign Tribal Nations” (2025), https://governor.wa.gov/sites/default/files/exe_order/25-10%20-%20Tribal%20Relations%20%28tmp%29_1.pdf.
9. “Governor’s Indian Health Advisory Council,” Washington State Health Care Authority, https://www.hca.wa.gov/about-hca/who-we-are/governors-indian-health-advisory-council.
10. V. Lowe et al., “Best Practices for the Exchange and Protection of Tribal Public Health Data: How Federal, State, and Local Governments Can Honor Tribal Data Sovereignty,” Journal of Law, Medicine, & Ethics 54, no. S1 (2026): 20-25, https://pubmed.ncbi.nlm.nih.gov/41986980/.
11. American Indian Health Commission, “Public Health Data Exchange Between Tribal, Federal, State, and Local Jurisdictions: A Legal Overview,” 2023, https://aihc-wa.com/wp-content/uploads/sites/49/2025/02/Exchanging-Data-with-Tribal-Jurisdictions-A-Legal-Overview.pdf.