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© SAIL Databank, Swansea University

Every three seconds someone in the world develops dementia, and the number of people living with dementia is projected to increase. With 850,000 people estimated to be living with dementia in the UK, it is the biggest public health crisis of our time. Due to the complex nature of dementia, the need for quality long-term data is high. The diseases which cause dementia take hold decades before symptoms show. Through their data and the state-of-the art research capability in Dementias Platform UK (DPUK), Welsh people are making an unrivalled contribution to research and treatment for Alzheimer’s disease.

The Welsh dementia data – housed in the SAIL Databank – is all anonymised and stored at Swansea University. Researchers have used the SAIL Databank to develop the dementia-specific resource, known as the SAIL dementia e-Cohort (SAILDeC). The work is published in the International Journal of Population Data Science. The scope of the new database is 1.2 million people’s records over 20 years. It allows researchers to explore the impact and progression of dementia on a population scale. Researchers will be able to see whether circumstances such access to social care or household income impact on dementia.

The SAIL Databank, from which the new dementia database is created, contains anonymised GP and hospital records from the 3.1 million people in Wales, including information on prescriptions and diagnoses. GP records are particularly valuable in dementia research because the vast majority of people living with dementia are at home, or under the care of their GP. The size of the Welsh data makes the potential insights into the disease and treatments particularly important.

Welsh health data is unequalled for dementia research

Every time you go to the doctor, an anonymised record of your visit – any diagnoses, prescriptions, symptoms and test results are stored by the NHS for use in research. Unlike most other countries which collect health data, Wales is one of very few countries in the world where researchers have access to primary care data for nearly everyone. This makes Welsh people’s data extremely valuable.

 

SAILDec makes Wales a living laboratory for dementia research; enabling virtually the entire Welsh population to contribute to developing new treatments. DPUK is delighted to support this groundbreaking study by making its data available to dementia researchers worldwide. 
- John Gallacher, DPUK Director

 

Dr Tim Wilkinson is one of the dementia researchers developed the dementia database and who works with the Welsh data:

This near-national coverage of GP data we have in Wales is revealing the strength of using an entire country’s health data for dementia research. Dementia scientists are able to work with detailed health data relating to dementia from 1.2 million people. Thanks to these numbers we’re able to have greater confidence in the accuracy of our insights too.

Nigel Hullah lives in Swansea. He lives with dementia and is a member of the 3 Nations Working Group for Dementia. He says:

“Research is the hand of hope. I’m delighted to know about this new resource I’ve helped to develop simply by living in this country. I know personally, and through all my work since my own diagnosis – there is no time to lose. We need to see creativity and innovation in the research, to improve the diagnostic rates and understanding of the best treatments.”

Ashley Akbari is one of the researchers based at Swansea University where the SAIL Databank is held:

“For dementia researchers around the world, having access to population-scale data on the people of Wales via the SAIL Databank is a great privilege and opportunity. The sheer scale of the linked data sources available is unparalleled: researchers have access to individual level data for almost the entire population. The level of linked details we hold at this scale is extremely rare for dementia research. It’s possible thanks to the technology and investment in governance and stakeholder engagement we have here in Wales, which is world-leading.”

Welsh data technology is at the highest security standards

The Welsh data is now being used in research to further understanding of dementia. It’s possible thanks to big steps forward in our ability to store large health data securely, bringing expertise together at Dementias Platform UK and Swansea University.

Chris Orton, Data Project Manager for Dementias Platform UK: “Together, the data and the technology provide us with a unique opportunity to advance dementia research. The SAIL Databank and Dementias Platform UK Data Portal are world-leading trusted systems that provide efficient and secure access to data. They provide us with the opportunity to bring expertise from the NHS, academics, policymakers and member of the public to conduct research – and have complete confidence in the security of patient data.”

For more information:

Secure Anonymised Information Linkage (SAIL) Databank:
Containing billions of person-based records, SAIL Databank is a rich and trusted population databank. It improves lives by providing researchers with secure, linkable and anonymised data that can be accessed and analysed from anywhere in the world. Within SAIL Databank’s secure, anonymised datasets is 80% of all General Practitioner (GP) data for Wales. GP records are particularly valuable in dementia research because the vast majority of people living with dementia are at home, or under the care of their GP.

SAIL dementia e-cohort: 
Researchers at the University of Edinburgh, working alongside Swansea University used the SAIL Databank, have been able to create a dementia eCohort (SAILDeC) of patients in the Welsh population, allowing further insight into the onset, development, and outcomes of dementia. This 1.2 million subset of the Welsh population, captured over roughly 20 years of data, provides a real-world, research-ready resource to truly investigate dementia in depth, and opens up the possibility of exploring dementia comorbidity, incorporating socioeconomic factors, and geographical relevance to dementia manifestation and development.

SAIL-Dec makes Wales a ‘living laboratory’ for dementia research; enabling virtually the entire Welsh population to contribute to developing new treatments.