The power of big data
Patient data has the power to revolutionise our approach to medical research and help improve human health. We’re funding scientists to use big data to tackle some of the biggest health challenges, including neurodegeneration. Here Ed Pinches, from Alzheimer’s Research UK, tells us why access to large data sets is so important in our fight against dementia.
It’s the hot topic, the subject dominating much of the latest news. Data. Your data. How it is used, how it is stored, who gets to access it, and for what purpose?
Last month dementia researchers and experts in data science gathered in London for the third annual Dementias Platform UK Conference. In a fascinating open-ended conversation, experts Prof Andrew Morris from the newly established Health Data Research UK (HDR UK), and Dr Rob Buckle from the MRC, discussed the role ‘big data’ needs to play in dementia research.
HDR UK is a £37.5 million national, interdisciplinary research institute -a joint investment led by us and eight UK wide partners. Its ambition is to develop and apply cutting edge data science approaches to address the most pressing health research challenges facing the public.
According to Alzheimer’s Research UK, there are more than half a million people living with a diagnosis of dementia in the UK, and the cost of dementia in the UK is expected to double over the next 20 years, reaching £55 billion by 2040.
But what is ‘big data’, and why is it useful when studying dementia?
Putting it simply, big data is the collection of extremely large amounts of information. But it’s not the volume of data that’s particularly important; it’s how scientists use it. With big data, researchers can begin to reveal patterns and trends, which can lead to new discoveries or help generate further questions.
Data for dementia research
We can all make guesses and act on hunches, but the true challenge and art of science is to be able to measure constantly changing events to shed light on what is happening and why.
Dementia is a particularly complex scientific challenge as its caused by a number of different diseases that develop as a result of the interaction of genetic, environmental and lifestyle factors. It has always been difficult to gather, store and process information related to these diverse elements of our lives, but technical advances and ambitious research initiatives are now unlocking the potential of big data for dementia research.
A more traditional way of conducting this research is with a pre-defined group of people who you measure at one point in time and follow up later to highlight changes, before moving onto a different set of people to compare results and findings. These kinds of studies are still important but they can be hard to do on a huge scale.
To accelerate progress in dementia research, scientists are turning to more ambitious approaches, using technology to compare and analyse many groups of people from different studies all at once. This means they can analyse huge collections of medical records, or other sources of relevant data, then summarise and effectively communicate this information to keep research moving forward.
Big data – a vessel for success
Big data has the potential to address some of the most fundamental questions that remain in dementia research. The online game Sea Hero Quest is a great example of how millions of people can contribute to research from the comfort of their own sofas.
Over 3 million people have downloaded the gaming app and have generated an amount of data that would have taken many decades to capture in a traditional research setting.
With users’ permission, researchers have been collecting anonymous information about how people play Sea Hero Quest. They’re beginning to use this information to answer important questions about human spatial navigation – how it changes between ages, between men and women, and between countries. It is exciting to see results continue to come out of such a rich source of data.
Ultimately researchers will use this data to identify subtle differences in navigation ability between people with and without dementia. This understanding will help researchers to develop tests that could help diagnose people with dementia earlier, and more accurately than is currently possible.
Keeping your data safe
Despite the enormous opportunities big data presents, people will have concerns about how their data is used in science. This is particularly true of health data from people who take part in research studies, or through the NHS by sharing information in our medical records.
Alzheimer’s Research UK have recently blogged about this topic to help you understand the role your patient data plays in research. It is essential that patient data is kept safe and secure to protect your sensitive, confidential information. Videos produced by Understanding Patient Data also provide a closer look at how your health data is being used and the incredible impact it can have.
Where can big data take us?
How safe is it to share big data? Will it be accessible for the public or only available to qualified scientists?
Would it be possible that, after all data has been carefully anonymised, it could be available for – let’s say – a teenager sat in her bedroom at home? Would she be able spot something the scientists haven’t seen yet, or approach a problem from a whole new perspective?
And how do we make it appealing to those doing the research to share their data?
These are all important questions that the research community needs to start answering. If we can realise the potential of big data it will save lives. Do let us know your thoughts and join the conversation about the role data should play in dementia research.
Are you interested in taking part in dementia research? Find out more about Join Dementia Research – a national initiative to enable you to take part in studies in your area.