Author: Dr Libby Ellins, Senior Scientific Writer, Health Data Research UK, Wales
What should the British Heart Foundation (BHF) Cardiovascular Data Science Centre look like?
This was the question we were trying to answer at a meeting at HDR UK last week.
Data custodians and the cardiovascular community have been set this exciting challenge by the Medical Director of the BHF, Professor Sir Nilesh Samani. The BHF want to fund a Cardiovascular Data Science Centre in partnership with HDR UK, to improve access to routinely collected cardiovascular health care data for the benefit of patients and the public (https://www.hdruk.ac.uk/news/british-heart-foundation-announces-plans-for-a-new-uk-cardiovasular-data-science-centre/).
For this meeting, we brought together the BHF Scientific Steering Group and representatives of the data custodians, such as NHS Digital, HQIP and NICOR. This led to an exciting and stimulating meeting chaired by our convenor Sir Alex Markham, who kept the heady heights of excitement in check.
We heard three excellent presentations from Professors Martin Landray, Harry Hemingway and Jacob West, looking at how the Centre could benefit cardiovascular clinical trials, phenomics (see Rhos Walker’s blog) and the wider work of the BHF itself.
We then heard from Dr Tom Foley on how NHS Digital and the Centre could work in partnership. Professor John Deanfield, having just made it back from America in time, shared with us his experiences and the challenges faced in delivering a successful NICOR programme. He also suggested how partnership with the BHF Centre could help build on NICOR’s international reputation and improve its ability to share data and deliver its full potential. Finally, Dr Steve Pavis gave us an insight into how they are improving accessibility to routine data in Scotland, with alignment between information governance that puts public benefit at the centre, combined with cutting edge data infrastructure.
The last talk, which updated us on perhaps the most critical issue of the meeting, was by Dr Gary Duncan, who spoke about the patient and public engagement plans being put together. We want the public and patients to be at the very centre of this initiative, which we hope will accelerate our ability to prevent the development of, and improve the treatment of, cardiovascular disease.
All of the talks generated much discussion, which was enriched by the different backgrounds and perspectives represented in the room. It was great to see a community building between the data custodians and researchers, and also the consensus from both sides on the need to deliver this important work in partnership and the keenness to get things moving.
So have we shaped the Centre? Not fully yet, but the way forward is becoming clearer. However, there is still much to do. At our next meeting in January, we will continue fleshing out the functions and priorities of the Centre, which I think will lead to some more constructive and robust conversations.
Have a very Merry Christmas in the meantime!
This is a guest blog for HDR UK and reflects the interests/knowledge of its author. Our blogs are designed to stimulate debate and are not necessarily reflective of HDR UK’s opinion
Image: British Heart Foundation