Could your health data help power dementia research?
The power of medical data took centre stage at the Alzheimer’s Association International Conference in London yesterday, as delegates heard from Prof Sir Simon Lovestone about some inspiring studies that are helping to bring real insights to our understanding of dementia. Prof Lovestone, one of the Lead Academic Scientists at our Oxford Drug Discovery Institute, was recently knighted for his contribution to dementia research over several decades. Much of his research relies on the involvement of volunteers who have signed up to take part in research studies, offering blood samples and undergoing tests to help Prof Lovestone and his team work to develop a blood test for Alzheimer’s disease.
While it’s absolutely vital to be able to recruit volunteers to these research studies, not everyone is able to commit to take part in this type of study. But there are other, much easier ways for people to help research as part of their ongoing healthcare. Prof Lovestone spoke about two projects where patients have agreed to share their medical records anonymously – allowing researchers to spot trends about how diseases like Alzheimer’s develop, or for example, what biological changes in the body might be used to help diagnose the disease earlier and more accurately.
Using health data from the UK and Europe
We blogged earlier this month about the ways big data can help dementia research as we launched a new project, IASIS, which aims to capture data from disparate sources and combine it to gain new information about Alzheimer’s. One of those sources is the UK-CRIS system – short for Clinical Record Interactive Search – which has become an invaluable source of information for dementia researchers. Begun by Prof Lovestone’s team nearly a decade ago at South London and Maudsley NHS Trust, today there are 14 NHS Mental Health Trusts involved in the initiative, and medical records from more than 2.5million people are now part of the UK-CRIS database.
On an even larger scale is the European Medical Information Framework (EMIF). Prof Lovestone outlined how this major project is linking over 60m patient records from a range of sources including hospitals and primary care, as well as information on 70,000 people who are part of a variety of different research studies. For a new study investigating a blood test for Alzheimer’s, for example, researchers would typically need to go through a lengthy process of recruiting volunteers to give blood samples and undergo a range of other tests, such as brain scans. But EMIF allows researchers to access studies that may have already collected this information – leading to real time savings in the process. As Prof Lovestone pointed out yesterday, we are all impatient for answers to this devastating disease.
Because of the sheer number of people involved in these initiatives, these hugely useful resources are helping scientists discover new information about diseases like Alzheimer’s, which in turn will feed into research to develop new treatments, preventions and better diagnostic tools. Prof Lovestone gave examples of researchers using UK-CRIS and EMIF to uncover which patients respond better to existing Alzheimer’s drugs, and to understand the cost of caring for people with dementia, providing crucial information for healthcare planning. Information from these initiatives is also feeding into ongoing work at our Oxford Drug Discovery Institute, helping identify potential new drug targets for scientists there to explore.
Keeping data safe
The use of patient data is a hot topic right now. Last year an independent review on the use of health data in the UK recommended the government should hold a consultation to help ensure people can make informed choices about how their data is used to improve care and support research. We know that when people understand how their data will be used, and how it will be protected, many are happy to share their data for research.
The projects outlined by Prof Lovestone yesterday are prime examples of this in action, and there is much we can learn from this model: in UK-CRIS for example, dementia patients and their carers were in the driving seat from the outset when it came to decisions about how the data use would be governed. For this initiative, researchers can apply for permission to access data to support specific research projects, but all identifying information such as names and addresses is stripped from patients’ health records when this data is shared. This means no patient can be identified by researchers who access the information.
Last week the government accepted the recommendations for protecting patient data and ensuring people have a way to give informed consent to its use, and this is a good first step. Ultimately, we would hope for a scenario where everyone is able to share their data for research, safe in the knowledge that their information is being properly handled. The UK is well-placed to lead the way in this effort. Prof Lovestone is right: we are impatient for a way to end dementia, and health records could have a big role to play in achieving this goal.
To get involved in research, visit www.joindementiaresearch.nihr.ac.uk