Researcher applies data infrastructure skills to address impact of COVID-19 and health disparities in Indigenous people

The global COVID-19 pandemic has deeply affected American Indian and Alaska Natives, delivering their communities large numbers of infections, hospitalizations and even deaths. As a response, the National Institutes of Health (NIH) established the Rapid Acceleration of Diagnostics (RADx) Underserved Populations (RADx-UP) to ramp up testing strategies in these populations.

Today, there are 11 new funded research projects working to further understand and address these alarming rates in American Indian and Alaska Native communities. Soledad Fernández, PhD, professor and vice chair of the Department of Biomedical Informatics at The Ohio State University College of Medicine, is part of the launch of the Rapid Acceleration of Diagnostics (RADx) Tribal Data Repository (TDR): Data for Indigenous Implementations, Interventions and Innovations. (D41)

Dr. Fernández will lead and help coordinate all aspects of the D41 project, and work together with multiple principal investigators and co-principal investigators to ensure progress on the study aim and ensure they have expertise they need on data management, quality control processes and accuracy. She’ll propose and guide the development, validate machine learning algorithms for different data types and provide overall leadership for the ethics and legal teams at Ohio State.

“This project involves a great deal of community-based research,” Dr. Fernández says. “The experience I’ve accrued in previous studies is very relevant to meet objectives.”

One of the main objectives of the study is to complete the research while adhering to a respect of tribal sovereignty. The transfer of the data collected from study participants and the use and owner agreements from study participants need to be renegotiated in accordance with tribal research regulations and tribal policy and law.

“We’ll work together as a team to make sure that all processes, policies and resolutions around data sharing, governance and use are adherent to tribal sovereignty principles,” Dr. Fernández says. “This will require a very close relationship, and robust communication systems among all participating tribal nations, NIH, Stanford University and our research team.”

Other objectives are to create educational activities and training programs on best practices for responsible data sharing and access, and to construct a secure repository to support data storage, access, harmonization and monitored sharing of data related to COVID-19 testing and vaccination rates. This ground-breaking project has the potential to build trust with Indigenous cultures and increase participation in research and science.