Lord Weir of Ballyholme (DUP)

My Lords, I join others in thanking the noble Lord, Lord Patel, for securing this debate. Across a range of medical conditions, we are hopefully on the brink of medical advances, underpinned by robust research, which have the opportunity to save lives or transform them for the better. With the structure of the National Health Service, we have a unique asset which puts us in a much better position than most other countries across the globe. Data can be of major benefit when it is collated correctly by government, its quality is uniform in nature and it is used effectively. I will give an example from outside the health service. During the pandemic, in Northern Ireland we had a single education authority which held all data for every person in Northern Ireland on free school meals and the uniform grant. That meant that, when support needed to be given to families in need, we could identify them straightaway. About 98% of families could be helped from the very start, which contrasted with most areas of Great Britain, where the data was quite often of a different nature and fragmented between different local authorities. I think that the Government’s response to the Sudlow review, in terms of the HDRS, is the right way forward, but there are four conditions which are critical to implementation. First, it is about not simply the quantity but the quality of data, particularly as most health data tends to be qualitative in nature. As has been highlighted, it is critical that data is codified, but must also be coded in a consistent way, and that we have linkages between datasets. Secondly, it is critical that we provide clarity and certainty for medical companies and researchers on what can be available. We need to ensure that data is research ready and that companies know what data they are getting, what the cost will be to them and how long they can have that data. That will enable them to plan research for the future. Thirdly, as has been highlighted, public trust is critical. One of the main barriers whenever the Government looked at some form of national identity was public concern over how their data would be used and whether it would be secure. Particularly now with malevolent foreign states and criminal gangs, we know that there is a risk of data breaches and data capture, so we need to ensure that what is put in place is secure from the start. Finally, it is important that we are comprehensive in our approach to geography and subject matter. We need to ensure that, for example, if we are going to integrate social care, that is factored into data provision, and that we have systems which take account not simply of NHS England but of services across the UK, involving all the devolved institutions working together to provide that data.