We spoke to Dr. Kieren Egan about his research at the University of Strathclyde and the importance of developing innovations in collaboration with those with dementia and carers from the start.The potential of the digital health space to help those with non-communicable diseases including dementia is immense, according to Dr. Kieren Egan.
Why did you get into the dementia and ageing research space – and what are the key questions for you?
My background is in neuroscience and pharmacology, but I now work in the field of digital health. I got into this area by chance really; at the end of my PhD I wanted to try my hand at some different skills and learn from working in public health. As such, I was seconded to the WHO in Geneva to work on a project developing interventions for caregivers.
That’s where I really started to understand the sheer scale of dementia across the world. We talk about numbers – 47 million people with dementia worldwide – but it’s hard to truly comprehend. I was really interested in trying to use technology as an engine to deliver solutions in this space.
What do you think the biggest impact of technology will be on non-communicable diseases such as dementia?
There are a number of key opportunities, but the three that are always uppermost in my mind are the potential for inclusivity, the speed of development and the promotion of independence in dementia and other long-term conditions.
There’s a lot of work being done at the moment around cost-saving innovative solutions for health providers. The challenge of inclusivity is making sure we do high-quality science with real experts in dementia, and that they are involved from the outset.
I am passionate that people with dementia – the carers and community at the heart of things – work alongside health and social care professionals, and it’s central to the research we do at the University of Strathclyde. When you start working with people from the outset like this you’ve got the potential for inclusivity.
The speed of development is interesting because digital is an exciting space and the possibilities are seemingly endless. However, in the healthcare space we need to take time to evaluate things thoroughly in order to get things right, as this is what will build trust, sustainability and confidence across users.
The final thing is independence and one of the biggest opportunities is about helping people stay independent for longer. In our society, people are living much longer now and the question is how do we make sure we can help everyone to live a high quality life in later years.
My hope is that it’s not going to be just a select few that benefit from the digital age, and that it’s going to improve life for as many people as possible. We know that there are social inequalities, and that they can be predictors of health levels for different groups of people, and I am interested in the way in which digital health solutions could actually provide a bridge to help to level things up.
Are there any particular challenges in the development of the digital healthcare space?
It’s such a growth area and there are lots of people doing really great things in this space. When you think about internet-based interventions it can mean anything from building up a knowledge or skills-based resource to creating a platform for carers to exchange information on or connecting individuals more directly to health and social care professionals.
I have worked with public health bodies to understand what is out there and we know that some of these interventions are really good – that building up a knowledge base can make a statistical difference for depression and anxiety for carers, for example.
The market is becoming flooded with lots of different technologies though, due to the speed of innovation, and there’s a need to make sure people are getting safe, effective, suitable interventions for them. We need to understand how to deliver the right resources to individuals at the time they really need it, and also how to adapt these resources to suit. This can mean making things culturally relevant for example, or making sure it’s personalised.
We don’t want to replace individuals, which is a big concern when I chat to people, day-to-day. In my research I try to use technology as a tool to make sure people do have opportunities to engage with others, and not replace human contact. Technology isn’t just a ‘one size fits all’ magic bullet that we can use to solve all problems – because one of the most important things about living well with dementia, for example, is maintaining a role in society and engaging with others.
Equally I think we also need to reassure people about things like security, because the more we’re wired into a digital world the more people need to feel comfortable and secure. You might go down to your GP and tell them your problems quite openly, but when it comes to technologies we still need to make it easier to do this and to create more trust.
What are the metrics for a truly effective digital intervention?
This is the question. I would want to see the idea of ‘personhood’ and ‘person-centered care’ retained in interventions, because the worry can be that we are throwing tech at problems without really considering the nuances.
For me, a good technology solution is about making sure we speak to all the key stakeholders as we are developing it and that we think about differing ability and about what people want to get out of it.
We need joined up thinking through development so it doesn’t become technology that becomes obsolete or phases out quickly – because there’s a lot in this space that does. It is key to be able to differentiate the high-quality from the tech that isn’t so useful – and that is something that is not always straightforward for users at home.
Engaging with third sector and looking at where people come together for dementia information can provide valuable information and signposting. We have a PhD student doing research into voice technologies at the moment, and one of the first things we did was to go down to the local dementia cafes and have conversations to get an appreciation of what it is like to have dementia, the kind of day-to-day problems people have and what kind of solutions they are looking for.
What role can digital interventions play in integrated healthcare management?
It’s an exciting space because we can really help people to get the right help and connect them to who they need to be connected to at the right time. But it will take time and if we want to get there, then again we have to be collaborative and work with people with dementia, carers and communities. These are going to be the people who implement the system and sustain it – and they need to be included in the conversation early on.
The most exciting bit of it for me is the potential of technology to pick up problems earlier, even before they happen, so that people can stay and age in their own homes for longer – which is a really positive thing for everyone.
In the health and social care space there’s a move toward digital health – but it’s also important that if someone is not going to be comfortable using something they’re not penalised for it. It’s important that we don’t exclude people just because they’re not tech savvy and that there is always training available for those who would like it.
What’s the most interesting thing you’ve discovered working in the digital health space?
There is a preconception that dementia is exclusively a condition of older people, which isn’t so, and an assumption in society that older people won’t use technology and benefit from it. Having worked in this space, I would challenge that opinion.
One of the things we’re keen to do here within the department at Strathclyde is make sure that we have that multiple stakeholder user engagement. For me, when you have meaningful co-design or development then that speaks volumes for how you can get good solutions out there. I am passionate about that, because I see the amount of time and effort it takes to generate the evidence – and ultimately you want your ideas to go somewhere.
I’ve also learned that none of us alone has all the answers – not academia, not industry – success comes from learning from each other and in tandem with people with dementia and carers to develop solutions, because this a truly global problem.
If we can start getting low-cost, low-tech solutions out there that can really make a difference then it will be exciting. I got into the field of dementia research without having any personal experience of it in my family, but since working in the field I have seen the trajectory and the uncertainty that it creates. There are many moments when I think we need to do better…and we need to do more.
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