Dr. Julia Baumgart is a Marie Curie Global Research Fellow, affiliated with both the SCI Action Canada Lab at UBCO, and the Norwegian University of Science and Technology (NTNU). Her research sits at the nexus of disability, health and technology.
The SCI Action Canada Lab is a community-engaged lab that explores how to inform, teach and enable people living with spinal cord injury to initiate and maintain a physically active lifestyle, as well as studying the mental and physical health benefits of movement for this group.
Dr. Baumgart’s work on the project team focuses on smart wearable devices and their use to collect data on physical activity, sleep and sedentary behaviour, particularly among wheelchair users, for whom these devices don’t fully detect and asses these data accurately. What motivates her most is using this technology to help people to improve lifestyle behaviours — ultimately improving their health priorities and outcomes.
What big questions are you trying to answer with your research?
At NTNU, I worked in the Centre for Elite Sports Research, in a lab that studied similar parameters across both Paralympic athletes and Olympic athletes. We found that the wearable technology produced relatively accurate readings for the Olympic athletes, but for the Paralympic athletes they could be quite inaccurate. While the focus of that research was around improving physical performance, I became drawn to improving health.
My focus on wheelchair users is because out of the people I’ve worked with, wheelchair users move the most differently. As a result, when we look at data outputs of their physical activity or sleep, the software delivers more inconsistent or inaccurate readings for those users. With wearable technology — and with technology in general — we need to put more effort into measurement and data being inclusive, otherwise it could perpetuate research and technological biases.
I've always got my Garmin and Oura ring on, and if you're someone like me who looks at it frequently to track sleep, fitness, stress, but the results are only accurate to someone else’s life situation, you might extract the wrong things out of it and/or be demotivated in your goals.
What inspired this research focus for you?
Fifteen years ago, I had an accident that resulted in a physical disability, and am navigating daily life with that. I see the population group I identify with being poorly represented in research.
I think what drives us collectively in the SCI Action Canada Lab is doing something that's meaningful for people. We do community-engaged research — meeting with people to get a sense of what they care about, in order to ensure that our research is addressing those needs. As a result I think that our lab attracts researchers that deeply care about having a genuine and meaningful impact on people's lives.
Is there anything unexpected that you found in your research?
As a side project we conducted an assessment of a popular scientific journal, focussing on the measurement of physical behaviour, to see how people with a disability are represented in their articles. Not surprisingly, we found that only five per cent of the articles considered this population, while we know that they comprise twenty per cent of the population. It is an important validator for our research and why we're doing what we're doing!
How has ARC’s cybersecurity and privacy support helped you protect your data or meet compliance requirements in your research?
Using the Avicenna Research platform [a commercially available digital health and clinical research toolbox used by researchers for its ability to turn smartphones and wearables into “micro research labs”] we’ve been able to essentially “hack” these devices’ to inspect more data at a much higher resolution.
This hacking of the data is where our work with ARC comes in. When we began working toward this project we needed more support to ensure that our project met compliance standards for both UBC’s Security Policy and Standards and proper cybersecurity practices. We pull a huge amount of really granular data, to develop our own algorithms and determine which parameters are meaningful to people with disabilities — resulting in hundreds of parameters. Wearable device companies don’t typically provide this level of data to users, but are increasingly seeing how researchers can deliver valuable insights that can in turn be used to improve their technologies, ultimately making them more useful for the people using them. ARC has helped us with compliance in navigating that extra level of data extraction.
We worked with ARC to complete a very detailed Information Research Security Threat Risk Assessment, which covered many of the technical aspects of using the research platform for our research project. I wouldn’t have known how to navigate all of this on my own, but ARC was great at walking us through it and explaining all the technical details, and they were able to point out where we had risks or things we could improve. It was really valuable to see that this kind of expertise is available to researchers across both UBC's Okanagan and Vancouver campuses, and I think probably not enough people know these services are available. The report showed us that we are doing a lot of things right, but also highlighted areas where we can be more thorough in how we collect and use data, which will help make our work better as we look at expanding the platform.
What's next for your research?
This project spans over my fellowship period, and I will continue to work on a couple of projects with the SCI Action Canada lab, but next I will move back to my home university in Norway, where I’ll start analysing the data we’ve collected and developing the software. The aim is to use the platform to help people change their behaviour, for example through a combination of app-generated messages and human follow-up. But that’s still a few years away.
The messages will need to be individualized — what works for one person might not work for another, and it also depends on the context they’re in. I’m probably a bit technology optimistic, but I think we can get to a place where the technology helps us understand that context and tailor messages to individual needs, rather than having a one-size-fits-all approach. And I think the messages also need to be actionable. If my device tells me I’ve been stressed all day, I want to know what I can do differently.
The community-based aspect of the SCI Action Canada Lab has shown me that we need to talk much more with the people the research is for and understand what they actually want from the technology. Data privacy is another important part; the work ARC has done will continue to help guide my work in protecting people’s data, including projects back in Norway
ABOUT UBC ADVANCED RESEARCH COMPUTING (ARC) RESEARCH CYBERSECURITY AND COMPLIANCE SERVICES
The ARC Research Cybersecurity and Compliance team supports research at both UBC Vancouver and Okanagan campuses, helping researchers to address security, privacy and compliance requirements throughout the research lifecycle. Services include security and privacy consultations, Security Threat Assessments, and training to support research projects of all sizes. For more information, visit the UBC ARC website.