My Lords, I rise briefly to speak to Amendments 60 and 116, and I congratulate my noble friend Lady Brinton and the noble Lord, Lord Hunt, on their persistence in pressing these two items, because they are extremely important. I also thank the Minister for his engagement, both on the Floor of the House and in extensive correspondence. This has been really quite a complicated trail. I feel as though we have been in a maze where we have had to follow a bit of string, finding the way through into data governance in the NHS.
We have had to follow certain key principles, which we all share and which the Minister has expressed, including the protection of privacy, the right of opt-out, the value of health data and, above all, the imperative to retain public trust. Given the importance of the new ICB regime, I very much hope that the Minister will be able to comprehensively answer my noble friend’s questions.
But if we have taken the time to get to this point of really understanding—or beginning to understand—the kind of data governance that the ICBs will be subject to, it raises the question of what future guidance will be in place. I very much hope that the Minister can absolutely give us the assurance that there will be new, clear guidance, along the lines I hope he is going to express in response to my noble friend, as soon as possible, especially given the speeding up of the electronic patient record programme, as my noble friend Lady Brinton said. That is, of course, desirable, but it has to be done in a safe manner.
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As regards Amendment 116, the Minister in his letter—which the noble Lord, Lord Hunt, addressed in his response—seemed a bit affronted that we should raise the credentials of NHSEI as a holder and protector of NHS data. I would refer to the BMJ letter, which I think came online yesterday, from Kingsley Manning, a former chair of NHS Digital. He really does set it all out. I shall not go into great detail but, for instance, he says that merging NHS Digital with NHSE
“is an important and retrograde step.”
Your Lordships may dispute this, but from where he sat this is important. He said:
“In my experience the general approach of NHS England, including of its clinicians, was that much of the guidance and regulations with respect to the use of patient”
data “was seen as unnecessary”. That is a pretty big statement and a fairly damning verdict from the former chair of NHS Digital. I do not think that the Minister can simply remedy the situation by assurances, so I support the amendment in the name of the noble Lord, Lord Hunt, and if it is put to a vote, I very much hope that the House will support it.
Finally, whether or not these amendments are pressed, I hope that the Minister will reconsider whether the Goldacre review should be published before the final version of the new NHS data strategy, Data Saves Lives. I welcome the fact that the Goldacre review is going to deal with information governance, but it is important that we should see that before the final version of Data Saves Lives.