More than a quarter of Brits say they own and use a wearable device – whether it’s counting our steps, helping us monitor how much water we’re drinking or telling us (inevitably) that we need more hours of quality sleep.
But what if some of that data could help scientists identify who was in the very early stages of a disease like Alzheimer’s, even before symptoms show?
Alzheimer’s Research UK is spearheading a global research programme called Early Detection of Neurodegenerative diseases (EDoN) to explore what our digital data could tell us about the health of our brains.
What are smart devices?
In short, everyday devices like watches become ‘smart’ when they’re networked, interactive and use computer-based technology to make our lives simpler and easier.
Predictions suggest that almost 60 million people in the UK regularly use a smartphone and with more people each year using wearables like smartwatches and fitness trackers, these digital technologies present huge opportunities for helping us, and our doctors, build a more detailed picture of our health.
Compared to brain scans or blood tests, they also have the advantage of being easy to use, cheap and can be used for long periods of time by people as they go about their daily lives.
Digital data and dementia
Dementia is caused by physical diseases like Alzheimer’s disease. Today, a doctor would diagnose a disease like Alzheimer’s, often using brain scans and memory tests, when people start to experience symptoms like memory loss or confusion.
But a disease like Alzheimer’s can start in the brain up to two decades before these symptoms start to show.
Research is revealing that in these early stages of disease, people can experience subtle changes in aspects of their day-to-day life such as sleep, speech, brain activity and movement. These changes might not be noticeable to the human eye, but smart devices could be sensitive enough to detect patterns in them.
If we could harness the power of digital technology to identify those people in the earliest stages of disease, it would be game-changing. We could help people access support, diagnosis, and lifestyle interventions much earlier.
And it would revolutionise the search for life-changing treatments for diseases like Alzheimer’s because potential new treatments could be tested in clinical trials at a much earlier stage. Testing treatments before too much damage has taken hold in the brain is likely to bring the greatest benefits for people with these diseases.
The EDoN initiative
EDoN is an ambitious £67m partnership initiative, setting out to explore whether patterns in a person’s digital data could pick up the early stages of a disease like Alzheimer’s.
EDoN launched last year but already, we’ve brought together 57 experts across 37 universities, research projects and technology companies across the UK, Europe and North America. The project is funded by Alzheimer’s Research UK, but also generous donations from funders including Bill Gates and Iceland Foods Charitable Foundation.
The power of EDoN comes through its size. To get the most reliable results, we need to combine different types of data from thousands of people across the world; including those who are healthy and those at different stages of diseases that cause dementia.
We’re doing this by working with volunteers already taking part in existing research studies globally, asking them to use digital technology to provide us with data about their day-to-day activities (e.g. sleep, heart rate, movement) using smartwatches, smartphone apps and sleep headbands.
The project’s digital and analytic experts will then use machine learning models to combine and analyse this data. By comparing it to clinical data about the volunteer, our teams will look for patterns that could give a sensitive and accurate signal of early disease.
If successful, we could use this kind of data to build a ‘Digital Toolkit’ that could help doctors to know who is most at risk of developing symptoms of dementia in the future.
What digital data is the most useful?
There are many aspects of our behaviour and how our body works (our physiology) that have been linked to the very earliest stages of Alzheimer’s and other dementias.
Experts in EDoN have reviewed over 140 different digital technologies, and shortlisted 4 smart devices to start testing in the first phase of the project – a sleep headband, fitness tracker and two smartphone apps.
Together, this Digital Toolkit will collect data on 26 different measures across 7 aspects of our day-to-day lives. This includes our cognition, brain activity, heart rate, sleep, speech, physical activity and how we interact with our smartphones. All the data we collect through EDoN will be done with the permission of the research volunteers.
As the project develops, so will our understanding. So we plan to change these measures and devices over time, until we find those that give our scientists the strongest signal of early disease and are easiest for people to use in their day-to-day lives.
How can I get involved?
At the moment we’re working with volunteers already taking part in existing studies across the world. But there are plenty of other dementia research studies looking for willing volunteers. You can sign up to volunteer for dementia research in your area through Join Dementia Research.
In the meantime you can follow updates on EDoN through this blog and our social media channels. If you’d like to support cutting-edge projects like EDoN, you can donate to support our work.