In September last year we set out our plans to engage with patients and the public and colleagues across academia, healthcare, charities and industry to find out how health data could help improve people’s lives through research and innovation. Between October and the end of April we are seeking input to the Digital Innovation Hub Programme – a major UK government investment, via the UK Research and Innovation Industrial Strategy Challenge Fund, to enable responsible access to health data to accelerate scientific research and digital innovation.
We have been staggered by the level of interest, enthusiasm and offers to support the Programme, which has involved over 3,000 people at more than 30 events, held both by HDR UK and other external organisations. We have travelled the length and breadth of the UK on our Digital Innovation Hub Roadshow – finishing in Belfast next week – as well as engaging peers and public both in the UK and abroad through conferences, webinars and events. We have received tremendous support during this phase from a variety of partner organisations who are keen to make this Programme a success.
Key themes have emerged from our engagement with the public, NHS, academics and UK industry. First and foremost, the need for public trust has been emphasised by all parties, something which we put at the heart of all that we do. We operate with patient benefit and public confidence in mind, and this will remain at the core of the Digital Innovation Hub Programme. Our Public Advisory Board members are giving up their time to attend many of our events and to review the documents relating to the Programme – this is just one part of our wider strategy for public engagement and involvement.
Another key theme that has emerged is the excitement for an initiative like this and the potential it offers. We are at the cusp of a great digital change that could benefit the whole population, and there is huge appetite to make better use of the data available to improve the lives of patients all over the UK.
Finally, we have been inspired by the amazing work that is already happening around the country in this area. We’ve heard, amongst other stories, about harnessing the potential of routinely collected clinical data to develop innovative care pathways for remote monitoring of heart failure patients in Manchester; using the EMRAD Wave 2 Testbed data to improve patient care in Nottingham; and the Assist-CKD programme in Wales to identify progressive chronic kidney disease in primary care. With every group we have engaged with, the huge potential of data-based innovations to improve healthcare is clear.
Now as we approach the end of this ‘Design and Dialogue’ phase, the team at HDR UK is reflecting on the wealth of insights gathered from people who want to use data for research and from the people who will benefit. This input has helped shaped the emerging model and is informing the development of a prospectus for the Digital Innovation Hubs, which will be published next month.
Thank you to all our partners and colleagues who have supported this stage of the programme. These include (but are not limited to): HDR UK’s Public Advisory Board, Understanding Patient Data, Use My Data, Association of Medical Research Charities, AHSN Network, the Office for Life Sciences, Medicines Discovery Catapult, ABPI, UK Bio Industry Association, Pistoia Alliance, MedCity, MRC, Innovate UK and UK Research and Innovation. We would also like to everyone that has attended the events, participated in discussions and provided valuable feedback that is helping us shape the Programme.
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