My Lords, I am grateful to the noble Lord, Lord Hunt of Kings Heath, for having put this amendment before us. I am not going to repeat the important points made by other noble Lords who have spoken but I have a few questions for the Minister. I should declare that I am a member of the BMA’s ethics committee and I am slightly concerned—if I heard the Minister right—that there has not been a comment back from the BMA, because there have been concerns about the potential monetisation of NHS data.
There were a lot of discussions within NHS Digital at the time of the passage of the legislation about pharma companies possibly having early access to some data and negotiating discounted prices as a result, particularly for expensive medication and early access. Can the Minister tell us how much discount has been achieved by some of those arrangements, whether those discounts have applied across the whole United Kingdom or whether they have been only of specific benefit within NHS England? As health is a devolved issue, we now have a problem particularly between Wales and England, where there is effectively a porous health border and many people are going from Wales to England for parts of their treatment cycles. That means that data moves across the border. So my next question is: what has happened in discussions with NHS Wales and what is being done to ensure compatibility for data transfer?
My next question relates to our experience last year when an NHS trust had its systems hacked and the whole system went down. How will the security of the new, larger holding of data be ensured? Obviously, if you have a lot of data held together, there are benefits but also risks. How are those risks being looked for and, as much as possible, mitigated against?
The other issue, again in relation to Wales, is somewhat historical but I have not been able to track down exactly what happened to some data. The Health and Social Care Information Centre merged with Connecting for Health in the 2012 Act. At that time, the data side was a UK-wide database. I wonder what happened to the data that was being held for Wales; whether NHS Digital still holds any data relevant to Wales; what discussions have been had with Wales over the transfer of relevant data; and what arrangements are being made for the future transfer of patient data—again, to allow the transfer of data while, importantly, preserving patient confidentiality. Of course, one of the problems when data is transferred between organisations is that there is a potential risk in terms of confidentiality and a possible leak.
My last question for the Minister is quite simple: why were these regulations not laid earlier? As I understand it, the processes are now well under way—indeed, they are almost complete in terms of the staff, the merger and so on. It would have been helpful for everyone to have been able to have sight of these regulations, as well as all the supporting documentation, earlier.