We live in a unique time. With huge technological advances being made across the globe, it’s difficult today to think of any aspect of life that has been untouched by the digital revolution. Technology is changing the way we live and work, and importantly, it is transforming the way we carry out health research. Hardly a day goes by when we don’t hear about new ways of approaching healthcare and medical research using digital innovation, from smartphone apps and wearables to citizen science projects that provide a wealth of data for research.
Many of these developments rely on the involvement of the public and patients, so it’s fitting that digital technology will be under the spotlight at the AMRC’s Patients First conference this month. I’m delighted to be joining a panel to discuss the implications of this new technology for health research.
Gaming for good
At Alzheimer’s Research UK, we are proud to be playing a part in this new wave of innovative thinking. Earlier this year, we joined forces with Deutsche Telekom and experts at UCL (University College London) and the University of East Anglia to harness the power of a simple smartphone game for dementia research. Sea Hero Quest is a maze game that’s fun, addictive, and is helping to create the world’s first crowd-sourced database of human spatial navigation ability. Data generated from users’ gameplay provides a benchmark of spatial navigation in healthy people, allowing the research team to understand problems with orientation and spatial awareness in people with dementia.
Image provided by Alzheimer's Research UK
The game proved immensely popular and quickly demonstrated its worth as a research tool. So far it has been downloaded 2.4m times, and in just two weeks players had provided our researchers with data that would have taken 1,170 years to collect through traditional research means. It’s a hugely exciting result, and one that would not have been possible without today’s digital technology coupled with some creative thinking.
Smartphone technology has also provided a valuable platform for us to help create understanding of what it’s like to live with dementia. Our virtual reality Android app, A Walk Through Dementia, allows users to put themselves in the shoes of a person with dementia and experience the varied symptoms that can affect people with the condition. The success of the app depended on the involvement of people living with different forms of dementia, who offered invaluable guidance to help shape the experience in the most realistic way.
These are just two examples showing how digital technology can be used to improve research and boost awareness of dementia. Many other examples exist across the research sector, such as the use of technology to help clinical trial participants get to and from trial sites – a simple but ingenious idea that not only helps researchers to recruit patients, but to reduce the drop-out rate which too often affects many clinical trials.
But there are still endless possibilities to explore: not least the potential for the NHS to be part of a new era of health research. The NHS already collects a wealth of data on patient health outcomes, which if harnessed in the right way could provide essential insights into the best ways to diagnose, treat and prevent a range of conditions, including dementia. Such a project could transform the way the NHS delivers healthcare and act as a real boost for research – but of course any steps in this direction must be made with patients at the centre. Through Sea Hero Quest, we learned that there is huge enthusiasm among the public to share data that can help research, so long as people understand how and why their data will be used. There is still huge untapped potential for the use of digital technology and health research, and there will be much debate over how to develop this potential: it’s critical that the voices of patients are part of that debate.
Hilary Evans, is a panellist in the 'Putting patients in the driving seat - digital technology and health research' breakout session (sponsored by MedCity) at the Patients First conference hosted by AMRC and ABPI.