Reflections on the DRI Journey: Advancing TBI Care in Indigenous Communities.

This speedblog, written by Sebastian D’Amario, is part of the OLS-9 cohort.

Project Background

My motivation for this project stems from a deep commitment to addressing healthcare disparities, particularly in Indigenous communities. As a PhD student in Neuroscience at Queen’s University, Canada, I am passionate about leveraging digital research infrastructure (DRI) to improve access to traumatic brain injury (TBI) care in remote areas.

The lack of specialized medical resources for head injuries in these communities inspired me to develop an advanced TBI screening tool that can be used in rural and remote environments. This project is not just about technology; it’s about empowering communities and ensuring equitable access to healthcare.

Expectations from this Program

When I joined the DRI equity, diversity, inclusion, and accessibility (EDIA) Champions program, I hoped to:

• Gain a deeper understanding of best practices while integrating DRI tools into my research.
• Learn how to effectively engage with equity-seeking groups, particularly Indigenous communities, to ensure that the tools we develop are culturally appropriate and beneficial to them.

The program offered a unique opportunity to bridge the gap between advanced technology and its practical application in underserved areas.

Goals Set at the Beginning of the Project

At the outset, my primary goals were:

1. To develop a culturally sensitive TBI screening tool for remote Indigenous communities.
2. To build DRI capacity within Indigenous communities by training local healthcare providers in using these tools.
3. To ensure that the project adheres to Indigenous data sovereignty principles, with community involvement at every stage.

Key Understanding and Accomplishments

Throughout the program, I’ve learned and accomplished several key things:

Cultural Sensitivity in Technology

• I’ve gained a deeper understanding of how to design technology that respects and incorporates Indigenous cultural practices. This has been crucial in ensuring that the tools we develop are effective and culturally appropriate.

DRI Integration

• These technologies hold great potential to streamline data management and improve diagnostic capabilities, particularly in remote settings where timely and accurate assessments are critical. Work thus far has significantly improved the efficiency of our TBI screening tool.

Community Engagement

• I’ve established strong partnerships with Indigenous communities and am continuously ensuring that the project is co-developed and approved by those whom it aims to serve.

The Main Goals Achieved in this Project

The main goals I set at the beginning of the project have largely been achieved:

• We’ve developed a TBI screening tool that is now being tested in remote Indigenous communities.
• The integration of DRI tools has been successful, and we’ve begun training local healthcare providers.
• The project has also been co-developed with Indigenous communities, ensuring that it adheres to Indigenous data sovereignty principles.

Looking Forward

My immediate next step is to finalize training for the TBI screening tool for all rural healthcare workers involved and continue ramping up its rollout in select Indigenous communities.

In the long term, I aim to:

• Expand the tool’s use across more remote communities.
• Continue building local capacity.
• Advocate for policy changes to integrate DRI tools into routine healthcare practices in underserved areas.

I plan to stay connected with the OLS community and other members. I believe that ongoing collaboration and knowledge sharing are essential for the success of projects like mine.

Special Mentions and Acknowledgements

I would like to acknowledge the invaluable support of my mentor, Dr. Douglas James Cook. I also want to thank the Indigenous communities I’ve had the pleasure to be involved with, particularly the Lac des Mille Lacs First Nation, Weeneebayko Health Authority, and Marten Falls First Nations, for their collaboration and trust.

Finally, I’d like to acknowledge the DRI EDIA Champions program for providing the resources and support needed to bring this project to life. This project has been a transformative journey, and I am excited to see where it will continue to go.

Thank you to everyone who has supported me along the way!