In the past few years, it’s been increasingly common to hear a friend casually announce some version of the sentence, “I’ve hit my 10,000 steps!”
This information probably came from some form of technology – like a FitBit or smart watch – secured around their wrist, tracking their day-to-day physical activity, sleep and other wellness-related behaviors.
Wearable technology isn’t just encouraging health and wellness in a preventative setting for the average, healthy person. Researchers with the Ontario Neurodegenerative Disease Research Initiative (ONDRI) are investigating the use of wearable technologies on people with neurodegenerative disorders such as Alzheimer’s disease, Amyotrophic Lateral Sclerosis (ALS) and Parkinson’s.
The goal is to capture a patient’s symptoms and health information outside of their clinic visits.
“We’ll often say if a visit to the clinic allows a clinician or physician to capture a picture of a person’s health, that home-based technologies may allow us to produce a movie,” says Karen Van Ooteghem, who is a research assistant professor at the University of Waterloo helping to advance ONDRI’s work with remote health monitoring.
Not only does wearable technology allow continuous tracking of a patient’s activity or sleep, but it also captures health changes that may not present at a patient’s clinic appointment, or that they may find difficult to describe in clinic.
For example, mobility and social interaction are important factors in determining a person’s health status, but changes in these domains can be difficult to quantify or describe, says Van Ooteghem.
By tracking and collecting out-of-clinic health information in patients with neurodegenerative diseases, researchers hope they will eventually be able to identify health issues earlier, monitor treatment compliance, and track disease and symptom progression.
But they’re not there just yet.
Investigators involved with ONDRI@Home, a new ONDRI initiative led by Bill McIlroy, are just at the beginning – they need to figure out if this kind of health tracking is feasible in people with neurodegenerative diseases.
For that reason, they’ve developed the Remote Monitoring in NeuroDegenerative Diseases (ReMiNDD) study, a six-month pilot project being run out of Sunnybrook Health Sciences Centre.
The hope for this study is to determine if people with neurodegenerative diseases and their caregivers will actually use the wearable technologies, and whether or not the researchers are tracking the right markers, which for now are sleep, activity, cardiovascular function, and speech.
McIlroy, a professor of kinesiology with the University of Waterloo, already believes the markers they’re tracking will change once the pilot study is completed and data is analyzed.
But identifying the right markers to track isn’t the only puzzle researchers need to solve – it’s also finding the right wearable technologies to provide them with the functionality they need.
“The activity monitors that you may be used to seeing on the market ‘fall apart’ really quickly when we’re looking at the specific needs of our groups,” says Van Ooteghem. “For example, if you have someone who walks very slowly or uses an assistive device to walk, the activity monitor’s outputs aren’t accurate; their algorithms no longer apply,” she says.
On top of that, not all market devices provide the end-user with the raw data collected by the device. For researchers to fully analyze the information these wearable devices collect, open data is a must, says McIlroy, who is also chair of the department of kinesiology at the University of Waterloo.Issues of ethics and privacy, including where the data would go, and who would have ownership of it, must also be addressed.
But for now, researchers are hopeful the first phase of the trial will prove wearable technologies are a valuable step forward in providing care for people with neurodegenerative diseases, and that the eventual data from this research will be combined with data other ONDRI researchers have sourced through studies with neurodegenerative disease patients.
“There will be something beyond the ReMiNDD study that says ‘now that you’ve worked out some of the key bugs, feasibility and proven the principle, now we take that and turn it into something grander,’” says McIlroy.
“We have the opportunity to create something that’s very unique,” says Van Ooteghem.