Achieving a Data Sharing Agreement:
A Collaborative Journey with South Dakota Tribes and the Great Plains Tribal Epidemiology Center
The South Dakota Department of Health (SD-DOH) recognizes the importance of strong partnerships and open data sharing with South Dakota Tribes and the Great Plains Tribal Epidemiology Center (GPTEC). This collaboration is essential for promoting public health, preventing disease, and upholding tribal data sovereignty. The journey to establish a formal Data Sharing Agreement (DSA) reflects years of dedication, mutual respect, and shared purpose.
The Urgent Need for Data Sharing
The COVID-19 pandemic and recent syphilis outbreak underscored the critical need for timely, accurate data sharing. These events highlighted gaps in access to line-level data, which are necessary for rapid response and effective public health action.
In response, the SD-DOH and GPTEC initiated formal discussions to develop a data-sharing agreement. On February 15, 2024, this agreement was finalized, granting GPTEC near real-time access to line-level data for all reportable conditions affecting American Indians and Alaska Natives, as well as aggregate data for non-native individuals. Notably, South Dakota is the first state in the nation to implement such an agreement with a tribal epidemiology center.
Challenges and Solutions
Prior to the pandemic, SD-DOH and GPTEC frequently collaborated on public health initiatives and shared summary-level data. However, in a GPTEC-hosted meeting during July 2021, a meaningful discussion began about the need for line-level data to strengthen Tribal public health awareness and capacity. The need for a formalized data sharing agreement became clear.
Timeline to Agreement
The timeline required sustained engagement and technical collaboration. Key milestones included:
- May 2022: GPTEC hosted a meeting to discuss draft DSA language modeled from the Northwest Tribal Epidemiology Center.
- June 2023: SD-DOH assumed the lead role in drafting the DSA language.
- August 2023: SD-DOH shared the first draft of a DSA with GPTEC and discussed plans to notify Tribes about the DSA.
- September 2023: GPTEC hosted a webinar for the Tribal Health Directors from each of South Dakota’s nine Tribes to explain the agreement and seek approval for inclusion of Tribal data.
- October 2023: SD-DOH and GPTEC first met to review the draft DSA, with legal counsel ensuring appropriate language and protections.
- January 2024: A follow-up meeting was held to finalize revisions.
- February 2024: The agreement was officially signed by SD-DOH and GPTEC.
Improving Health Outcomes through Data
The DSA enables GPTEC to better identify and respond to public health challenges affecting American Indians and Alaska Natives, both on and off Tribal lands. Shared data strengthens both SD-DOH and GPTEC efforts to reduce health disparities, guide culturally appropriate interventions, and monitor trends more effectively.
A key benefit of this collaboration is that public health actions are both evidence-based and grounded in data from the community, leading to improved outcomes and better care.
Strengthening Trust and Tribal Sovereignty
Central to the agreement is a shared commitment to tribal data sovereignty – the right of Tribes to control their data and how it is used. SD-DOH’s willingness to share data respectfully and transparently reflects a deepening trust and alignment with Tribal public health initiatives.
This agreement builds on years of partnership and establishes a stronger foundation for future collaboration.
A Model for the Nation
The SD-DOH and GPTEC data sharing agreement sets a national precedent. By honoring tribal sovereignty and fostering shared data stewardship, this agreement demonstrates how state public health agencies and tribal epidemiology centers can work together to promote public health, prevent disease, and improve health outcomes for American Indian and Alaskan Natives.