When you have a neurodegenerative disease, like Parkinson’s or Alzheimer’s disease, your symptoms may ebb and flow during the day. Going into a clinic for testing captures your status at that point in time, but how do you gain an understanding of what is happening throughout the rest of the day or over the course of many days?
Kinesiology researchers at the University of Waterloo are leading a remote monitoring wearable technology project called ONDRI@Home, a platform of research within the Ontario Neurodegenerative Disease Research Initiative, which is supported by the Ontario Brain Institute. ONDRI@Home aims to monitor participants’ overall health and function, such as sleep, movement and social engagement as they go about their daily lives in the comfort of their home environments.
“The program works on several levels,” says Karen Van Ooteghem, an ONDRI scientist and researcher with the Neuroscience, Mobility and Balance (NiMBal) Lab here at Waterloo. “At the individual level, data from these sensors empowers individuals to make positive lifestyle changes, self-manage symptoms of their disorders and monitor their own health for timely intervention when there is a change in their health status.”
It also provides information to their clinicians that may translate into better care, and it has the potential to lessen the burden on care partners who typically play an important role in caring for their loved ones living with neurodegenerative disease, she says. Finally, because the aggregated data is deposited in a larger repository, called Brain-CODE, it can serve as a population-level tool as well.
“There was an increased recognition that things that were being captured in clinic were great – gold standard – but what was missing were measures that were important to describe the progression and status of neurodegenerative disease at home,” says Bill McIlroy, a Kinesiology professor and head of the NiMBal Lab.
“Things like falls are never really captured well in a clinical setting, so we advocated for a wearable approach, where we would have an at-home component to the assessment going forward.”
More apparent than before
The pandemic accelerated the need for this type of remote health monitoring. “The need to pivot to capture information from these individuals and to develop new approaches to monitor health became even more apparent than it was before,” says Van Ooteghem. The team is now serving up to 300 patients per year, and growing fast, McIlroy adds.
The researchers are capturing data not only from people with neurodegenerative disease, but also from healthy people for comparison through the Kinesiology Department’s Centre for Community, Clinical and Applied Research Excellence (CCCARE).
“Participants wear a set of three to four sensors that capture different but complementary information,” says Van Ooteghem. “A personalized combination of sensors serves to optimize collection for participants, dependent upon specific measures of interest, in order to help them with self- and clinical management. They wear these sensors for an extended period of time to log or capture the data, then send them back to us, where we offload and process it.”
The data reflect participants’ activity, sleep, cardiovascular function and social engagement. “The approach that we’ve adopted is not to rely on commercial products; these are inadequate for health applications,” says McIlroy. “We are device agnostic: We don’t care what the devices are as long as they can get us the raw data needed to advance analytics and solve a health issue.”
For example, the researchers are using accelerometry not only to understand how people move, but also to capture speech patterns. “We can place it near the throat to capture speech behaviour that is picked up by the acceleration signals, which tells us how often they are talking and capturing other features of their speech that can tell us how they are doing in terms of social engagement,” says McIlroy.
“There is no need for a microphone, and we can tell how they are engaging with others and the quality of their speech, 24/7.”
A spinoff benefit of this project has been the development of a hands-on Kinesiology wearable technologies course for fourth-year students. Built on links between health and the use of wearable technology developed within ONDRI@Home, the course provides health science students with training on wearable technology and data analytics.
“Courses that integrate health sciences with practical training in technology and data sciences are increasingly important as the applications of technology continue to accelerate,” says Anton Trinh, a technical support specialist who co-developed the course with McIlroy.
Van Ooteghem says one of the most exciting aspects of this project involves the interdisciplinarity of their team, which includes collaborators from engineering and co-op students from Engineering, Physics, Biostatistics and Computer Science. Most recently, this has included third-year nanotechnology student Hannah Bernstein, who completed an eight-month co-op placement with the group.
“As someone who wants to work in the health-tech field and someday build wearable sensors and medical devices, working with this group provided an incredible opportunity to learn from and work with experts in the field, as well as interact with doctors and patients who would use and benefit from the devices,” says Bernstein, who had the opportunity to work on both the device and algorithm side of the projects.
“A big challenge in a research program like this is finding the best way to manage and process large volumes of data,” Van Ooteghem says. “We’ve needed programmers and engineers to help us build algorithms to make sense of it all. Through a series of code we’ve developed, we can take raw data from the sensors and transform it into meaningful outputs.”
McIlroy, like all the researchers, tested the wearable tech before deploying it. When he first saw how fragmented his sleep was, he said it was an “eye-opener” and made changes to his lifestyle to correct for it.
This reaction is not unusual, and this is what the researchers are counting on for both healthy individuals and those living with neurodegenerative disease and their care partners. A research program like ONDRI provides the foundation for developing solutions to help improve quality of life for individuals and their caregivers, and ultimately work at a health systems level by providing a more comprehensive view of disease that can guide health services.