Towards Becoming Data Sovereign

Fort Belknap Indian Community, Harlem MT

Investigators

Abstract

RESEARCH INFRASTRUCTURE ENHANCEMENT PROJECT 1: Becoming Data Sovereign Project Summary: The Aaniiih Nakoda Tribes Native American Research Centers for Health (NARCH) Research Infrastructure Enhancement Project will take an innovative approach to develop and strengthen Aaniiih and Nakoda Tribal data systems with a long-term goal of collecting and managing Aaniiih and Nakoda Tribal data, safely warehousing data, and utilizing data to make informed decisions about public health efforts and tribal programming. Indigenous Peoples have specific and longstanding concerns regarding the collection, storage, and use of specimens and data. Our primary aims are to: (1) to strengthen administrative infrastructure, including establishing a leadership team and a Tribal Advisory Board (TAB) that ensures integration of career enhancement, capacity building, and data related activities; (2) build tribal capacity by collaboratively developing a set of research codes to govern the conduct of research within Aaniiih and Nakoda Tribal jurisdiction predicated on the concept of tribal data sovereignty; (3) Develop Data Governance Strategy and data policy recommendations (management, safety, sharing, ownership); (4) Analyze existing documents and research on tribal data safety and storage policies; (5) Educate investigators, and trainees in data sovereignty, safety, and storage and, (6) Establish a tribal research agenda to guide research. The NARCH X grant will allow us to develop and strengthen Aaniiih and Nakoda Tribes capacity to collect, manage, and warehouse tribal data. We are developing a long-term strategy to enhance control of Aaniiih and Nakoda data collected within tribal jurisdiction through strengthening administrative infrastructure, developing research codes and a data governance strategy. The Aaniiih and Nakoda Nations have the right to govern the collection, ownership, sharing, and application of its own data collected within Tribal jurisdiction. A TAB will guide, oversee and approve our Aims over the extent of our project. This project addresses a critical step to allow Tribes to better respond to health priorities and crisis which over time will impact health disparities.