My Lords, I am very grateful to the Minister and other noble Lords who have spoken in this debate. I should say that I am particularly grateful to the noble Baroness, Lady Brinton, as she and I have been working on this for quite some time, along with the noble Lord, Lord Clement-Jones, who unfortunately could not be here tonight.
I very much take the substantive point. If you look at care.data, essentially the people running it were very careless in terms of the confidentiality of patient information. That set back the whole programme for a number of years, and that is the lesson that we need to remember. The noble Baroness, Lady Finlay, raised some very important points, including about Wales, on which the Minister has responded in terms of the agreement that has been reached with the Welsh Assembly Government, but her point about the security of local NHS data is very relevant to the way we are going forward.
On the issue of commercial companies, 20 years ago, I took through the legislation to allow the NHS or the Department of Health to agree with commercial companies a very legitimate use of patient information. We had in mind the research institutes and pharmaceutical companies, because we have such a rich information source in the NHS, and we wanted to do that to encourage new medicines and speed up their introduction to NHS patients. The problem is that as it has proceeded there has been a lack of transparency, and this wretched commercial incompetence has undermined confidence in what is happening. It is perfectly legitimate to seek to use this information, provided patient confidentiality is preserved, for the enhancement of our knowledge and understanding and future treatments. Clearly that is in everyone’s best interests.
On UTOPIA, mentioned by the noble Lord, Lord Allan, I could not help thinking of “Utopia, Limited”, the Gilbert and Sullivan opera. The alternative title is “The Flowers of Progress”. He went through the list: Avon FHSA, the Exeter system, NHS AI Lab, Connecting for Health. Such happy memories. The point that he raises is that the NHS and the Department of Health have a constant need and desire to restructure. We know this is displacement activity. Even now one hears that NHS England wants to reduce the number of regions and you think, “For goodness’ sake! Can you not understand that it’s completely hopeless thinking a restructure will have any impact whatever on the task in hand?”
This is the substantive point: we know that we are going to be back here debating an SI at some point which will take NHS Digital out of NHS England and establish a separate body. No one will take a bet on it, because we know it is going to happen, and I am afraid that this instability really detracts from the core purpose of what we are seeking to do. My noble friend Lady Merron raised some very pertinent points about the information, the lack of final guidance, the impact on staff and the big question about patients knowing whether their information is being used, which I believe from the advice I have received is possible. I hope that, as the work gets taken forward, this will be taken very seriously by NHS England. The Government will find that patients will have much greater confidence if they get that information, and that most of us will be absolutely supportive of why that information has been used.
Finally, I thank the Minister for his constructive response and the parliamentary briefing that he has offered on the 12-month review; I also think the information about Wales has been very helpful indeed. Having said that, we wish him and his officials the very best in taking this work forward, and I beg leave to withdraw my amendment.