It has been announced today that Action Against AMD, the research organisation of which Blind Veterans UK is a founder member, will partner with leading organisations and the UK Government to establish the Health Data Research Hub for Health.
The hub, called INSIGHT, is focused on eye disease such as AMD and Glaucoma, and its application to wider health, including diabetes and dementia. It will use anonymised large-scale data and advanced analytics to bring new clinical insights: from detection, diagnosis and referral, to new treatments and personalised healthcare.
There is an increasing demand for ‘big data’ to enable innovation in health technologies and improve patient care. INSIGHT creates an NHS-academic-industry partnership to make anonymised datasets accessible and provide critical services that respond to user needs (patients/industry/other), including ‘real-world evidence’ and ‘smart’ clinical trials for new drugs or devices, and accelerating AI-algorithm development for the NHS and beyond.
INSIGHT turns routine eye imaging - currently >25million/yr (UK) - into an exceptional asset for innovation as a convenient, uniquely valuable health snapshot. INSIGHT unlocks this opportunity by pairing unique anonymised data assets to hubs of expertise where patients and clinicians can, with industry, more efficiently explore the safety and use of new AI systems. This will accelerate the pace with which AI is able to translate to real patient benefit for the NHS and accelerate innovation across all sectors.
Prof Alastair Denniston, Consultant Ophthalmologist - University Hospitals Birmingham and University of Birmingham, and Director of INSIGHT, said:
“Sight is the most precious of all the senses and yet in the UK around 2 million people live with sight loss. As an eye doctor, I am dedicated to working with the whole community to improve treatments for people with sight-threatening conditions like age-related macular degeneration and diabetic eye disease. I have also seen how our incredible imaging technologies can be used to identify and predict diseases beyond the eye such as dementia or heart disease.
INSIGHT is about using the power of health data and the development of artificial intelligence solutions to tackle blinding diseases and other serious conditions. INSIGHT will be a resource that will accelerate our understanding of disease and enable us to detect disease earlier, personalise care and accelerate the development of new therapies.”
Dr Wen Hwa Lee, CEO Action Against AMD, who also represents Blind Veterans UK, Fight for Sight, Macular Society and Scottish War Blinded, said:
“We welcome Health Data Research UK’s and INSIGHT’s ground-breaking initiative to include patients and public in transparently deciding how health data can be used. This is a great way to establish trust among all stakeholders, who can create together the future of eye health and possibly even other conditions.”
“The majority of the blind veterans we support have lost their sight due to age-related conditions such as macular degeneration. Blind Veterans UK is proud to be part of the INSIGHT partnership, a project that harnesses the power of health data to improve quicker diagnosis and future treatments.”Blind Veterans UK Chief Executive, Major General (rtd) Nick Caplin CB
- University Hospital Birmingham NHS Foundation Trust
- Moorfields Eye Hospital NHS Foundation Trust
- University of Birmingham
- Google Health UK
- Action Against AMD
The Health Data Research Hubs
Led by Health Data Research UK (HDR UK), these hubs aim to improve the lives of people with debilitating conditions, and will link up different types of health data and make it more easily accessible and user-friendly for research, while maintaining strict controls around data privacy and consent.
The potential benefits to patients include earlier diagnosis, the development of more effective treatments and more efficient management of the health service, all of which have the potential to improve outcomes, helping patients enjoy longer and healthier lives.
Patients, researchers and clinicians will work together to explore the safe and ethical use of health data for research into specific therapeutic areas, including eye health. Patients will be involved in decisions about how their data is used to ensure the benefits are returned to the NHS and the wider UK community, and existing rules for accessing data safely and securely will continue to apply.
The Health Data Research Hubs are part of a four-year £37million investment from the UK Government Industrial Strategy Challenge Fund (ISCF) announced in November 2017 led by UK Research and Innovation, to create a UK-wide system for the safe and responsible use of health-related data on a large scale. The hubs will also stimulate further economic growth through greater research activity.