Dementia announced as one of HDRS’ first priorities 

Speaking today at the Innovation Nation Summit the Prime Minister, Andy Burnham, announced that the Health Data Research Service (HDRS) will support his mission to improve care in the UK by making dementia one of its first priorities.  

Dementia remains one of the greatest health and social care challenges facing the country. Nearly one million people are living with the condition in the UK today. Around one in two people will be affected by dementia in their lifetime, either living with the condition, being a carer or both. 

The condition places enormous pressure on families, carers, the NHS, and social care services. Dementia is estimated to cost the UK more than £42 billion a year, with the vast majority of costs falling on social care and unpaid care provided by family and friends, and the cost to the NHS at £7 billion. 

The focus provides an early opportunity to demonstrate how better, more secure access to data can help answer important research questions and ultimately improve outcomes for patients.  

By making it easier for approved researchers to securely discover and analyse health data at UK scale, HDRS aims to unlock research that would otherwise be difficult or impossible to undertake. 

The work will also help HDRS learn from a real and important research challenge as the service itself is developed – ensuring its infrastructure and services respond to what researchers and patients actually need. 

Mr Burnham also announced that the Government is investing £33 million through the Dame Barbara Windsor Dementia Goals programme, alongside funding from Bristol Myers Squibb, GSK and Gates Ventures, to tackle one of the biggest barriers to dementia research: recruiting enough people into clinical studies to test promising new treatments. 

The investment will support the work of The BARBARA Alliance, a UK-wide not-for-profit partnership bringing together government, industry, academia, charities and people with lived experience of dementia. 

Its flagship programme, BARBARA, will create a single, co-ordinated platform linking the UK’s health data, research and clinical trial capabilities, making it easier for researchers to find participants and for people across the UK to take part in studies. By tackling one of the biggest bottlenecks in dementia research, the programme will help speed up clinical trials and bring promising new treatments to patients faster.  

HDRS complements the work of The BARBARA Alliance. BARBARA will help more people take part in trials, while the Service will give scientists the evidence and insight needed to design better studies and drive new discoveries which could bring treatments to patients faster. 

Dr Melanie Ivarsson, CEO of HDRS, said: 

“HDRS is ultimately about people, not data. Behind every dataset are patients and families who want better answers, earlier diagnoses and more effective treatments. 

“Dementia is an area where better use of health data has the potential to make a real difference. By enabling research on larger, more connected datasets, we have an opportunity to answer questions that simply cannot be answered using smaller or fragmented datasets. 

“Making Dementia an early priority will also help us build HDRS in the right way. We can start with the needs of patients and researchers and build the infrastructure around the problems they are trying to solve – while ensuring security, transparency and public trust are designed in from the beginning.” 

 Nicola Blackwood, Chair of HDRS, said  

“By making it easier for approved researchers to securely discover and analyse health data at UK scale, HDRS aims to unlock research that would otherwise be difficult or impossible to undertake. 

“In dementia, this could help researchers to better understand how the condition develops and affects different populations; identify opportunities for earlier and more accurate diagnosis; find the right patients for clinical trials; understand which treatments work best, for whom and under what circumstances; and build evidence about how new treatments and technologies perform once they are being used in healthcare.” 

Jessamy Baird MBE, CEO of The Barbara Alliance, said  

“Today marks a huge step forward in realising a new generation of precision dementia therapies and solutions for the UK. 

“We look forward to working closely with HDRS, as they build the national infrastructure to make secure access to health data simpler, faster and more consistent.  

“Our collective efforts in partnership only strengthen our ability to achieve our shared ambition to make better use of health data to accelerate research, improve patient outcomes and strengthen the UK’s life sciences capabilities. 

The work will also help HDRS learn from a real and important research challenge as the service itself is developed – ensuring its infrastructure and services respond to what researchers and patients actually need. 

HDRS will continue to work with patients, researchers, clinicians, data custodians, NHS organisations and charity partners on defining its priorities and services. 

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