“Public health is a powerful tool to level that playing field, to bend the arc of our country away from distrust and disparities and back towards equity and justice.” – Leana Wen

1. Respect for Tribal Sovereignty

Tribal sovereignty is the inherent right of Tribal governments to protect the health, safety, and welfare of their citizens without the need for this power to be granted by the U.S. or by treaty or statute. As sovereigns, Tribes have rights to self-determination in the creation, management, and use of Tribal data through formal governance and agreements over their access and use, such as through the development of memorandums of understanding (MOUs), data sharing agreements (DSAs), or other intergovernmental agreements. The recognition of Tribal sovereignty is foundational to developing data sharing relationships with Tribal nations.

2. Tribal Engagement and Consent

Ethical use, representation, and interpretation of data are advanced when Tribal health authorities can choose how Tribal data are collected, managed, analyzed, used, and shared, and with whom. Respecting the sovereign rights of Tribes to control their data by engaging in regular, meaningful, and robust consultation builds respect, understanding, and trust and promotes reciprocity. Meaningfully partnering, consulting with, and following the guidance of Tribal leaders on the analysis, interpretation, and presentation of data by non-Tribal public health authorities when reporting on Tribes or about AIAN health outcomes helps uphold Tribal sovereignty.

3. Good Data Practice

As with any good data management practice, Tribal and non-Tribal public health authorities should have strong policies to protect the privacy and security of personally identifiable information, ensure high quality and completeness, and maintain data in a secure environment. However, laws that promote data privacy and security, such as HIPAA, are frequently misinterpreted or misapplied to prevent the sharing of data for permissible purposes. An equity-focused approach to data sharing will ensure that Tribal public health authorities and non-Tribal public health authorities have comparable access to data.

4. Centering Equity

Without ensuring equitable access to public health data for Tribal public health authorities, they will struggle to meet the needs of their people and address health disparities. Tribal health authorities may need data for all people in their appropriate geographic regions for adequate public health response and epidemiologic studies. Working together helps progress towards collective goals. Such practices will enable Tribes to use their expertise to identify priorities, needs, and culturally appropriate interventions as well as to define what success and improvement should look like. Such collaborations can go beyond AIAN people to have broader implications for other underserved groups by improving levels of trust and accountability in the use of community data.

1. Get Leadership Buy-In

Leadership buy-in can help facilitate and remove barriers to data sharing. Health department leaders will need to understand the legal basis for Tribal data access; the importance of data sharing; how it will benefit non- Natives, Tribal Nations, and AIAN people; barriers to data sharing; Tribal data needs and priorities; and types of data that can be shared.

2. Establish Regular Communications

It is vital that non-Tribal public health authorities build and maintain good relationships with Tribal health authorities in their service areas. Policies and practices that require regular communication, like the Tribal Consultation requirement used by federal agencies, can help identify Tribal data needs, barriers to data sharing, and partnerships for development. These processes need to be routine, cyclical, and iterative.

3. Assess State and Local Laws and Regulations

Examining state laws, regulations, and policies around data sharing can help state and local health departments determine what needs to be modified or improved to improve data access. If legal or interpretation barriers exist, seeking statutory amendments to establish equitable access may be necessary and is encouraged as long as proposed amendments do not lead to unintended consequences that further limit access and sharing with Tribal public health authorities.

4. Create a Data Inventory

Establishing and maintaining a data inventory can help Tribal public health authorities understand what datasets are available and the limitations of each. A routinely updated data inventory should identify data holders, where the data are stored, what kind of data elements are available (e.g., race and ethnicity, Tribal affiliation), how the data can be accessed or shared, and how often the data are updated.

5. Define Clear Request Procedures

Data sharing can be better facilitated if an agency has standardized and streamlined procedures for requesting data, regardless of data system or the presence of specific staff. Assurance this information is rapidly and easily accessible improves collaboration and outcomes.

6. Document Data Sharing

Data sharing should be consistent, frequent, and documented through official agreements or memorandums of understanding (MOUs) that include data sovereignty principles. Commit to relationships with Tribal health authorities in writing.

7. Practice Good Data Governance

Tribal data sharing should be governed by a robust, mutually agreed upon data governance process that includes discussion of data security and public release between the non-Tribal and Tribal public health authorities. Tribal-specific data should not be published without consultation and consent of the Tribe.

8. Champion Equitable Tribal Data Access

Public health for all, Native and non-Native peoples alike, can only improve with increased cooperation and coordination between Tribal and non-Tribal public health authorities. As local, state, or federal public health professionals, advocating for equitable data access for Tribal public health authorities is advancing public health.