“It is a capital mistake to theorise before one has data” were the words of Sherlock Holmes in the novel A Study in Scarlett.
Today sees an important milestone in the UK’s quest to build a trustworthy health data research infrastructure. Following a six month phase of design and dialogue, we are launching a call for five Digital Innovation Hubs across the UK which will make data more easily available, subject to strong privacy and security constraints, and to use it in efforts to discover new diagnostics, preventative medicine, medical research and the identification of value that drives better patient outcomes.
HDR UK is privileged to be invited to lead the Digital Innovation Hub Programme. A huge thank you to over 350 organisations and 2,700 people who we have engaged with across the UK, from all backgrounds including patient groups, charities, NHS, industry and academia who have guided the development. This has been done in partnership with expert groups such as the Association of Medical Research Charities, the Office of Life Sciences, the ABPI, the BioIndustry Association, MedCity, the Pistoia Alliance and the Medicines Discovery Catapult.
My reflection is that the UK is sitting on an inflection point, whereby if we are able to curate and make health data available in a way that maintains confidentiality and in the public interest, it will propel us to a world-leading position whereby we harness data to drive improvements in patient care, whilst realising benefits for the NHS, academic and industry. If we get this right, we will enrich lives, as well as driving economic development at scale across the UK.
During our consultation, there were three key messages for the Digital Innovation Hub Programme. Firstly, we must champion public engagement and trust, returning insights and benefits to the NHS patients and the public. Secondly, there is a burning international need for data that is event based, multi-modal and very high quality and indexed – this is the essence of curation. This high quality data needs to be coupled with clinical and technology expertise; the ability to interpret and annotate both structured (e.g., electronic health record) and unstructured (imaging) data to define what is important to patients and clinicians. Finally, the UK needs to be far more agile in how data are accessed, as speed is of great importance.
I encourage you to look at the Digital Innovation Hub Programme to see how you may be able to contribute today or in the future. This is a bold, ambitious UK-wide programme that will pioneer new medicines and treatments as part of our modern industrial strategy.
The last six months have been invaluable as we have defined the model and created a UK wide community – the challenge now is delivery. We look forward to working with patients, NHS, industry, Government and academic scientists across the UK to make things happen. The opportunity to analyse anonymous data that spans clinical medicine, the molecular underpinnings of disease and new data types such as imaging and wearables presents endless possibilities.
As Sherlock Holmes also said: “When you have eliminated the impossible then, whatever remains, however improbable, must be the truth”. The exciting possibility is that this UK effort will mean people can receive new medicines quicker and get more timely diagnosis which will ultimately save lives.
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