Health and Social Care Information Centre (Transfer of Functions, Abolition and Transitional Provisions) Regulations 2023

Lord Hunt of Kings Heath Excerpts

Wednesday 25th January 2023 Lords Chamber

Moved by

[Lord Hunt of Kings Heath]

At end insert “but that this House regrets that (1) the consultation on the statutory guidance that will direct NHS England’s handling of the medical data under these Regulations is being conducted in a rushed and piecemeal manner, and (2) the results of that consultation are not available alongside the Regulations to reassure the House that patient data will be used properly”

[Lord Hunt of Kings Heath (Lab)]

My Lords, let me say at once that I support the digital transformation of the NHS and the use of information to enhance patient outcomes. I want to see the NHS move faster in a digital world, but it is essential that there are safeguards in place to protect the integrity and confidentiality of patient data. I say that as I look back into the history of NHS data, where we confronted a number of occasions when this did not happen. That is why this is such an important debate. I am grateful to the Minister for the assurances he has already given in his opening speech, and through him I thank his officials for the way in which they have been prepared to engage with us over the past few months, which has been very helpful.

I remain of the view that it was a mistake to bring NHS Digital, or the Health and Social Care Information Centre as it was formerly known, into NHS England, and feel that there are some inevitable tensions and conflicts in so doing. I think the review that led to this overlooked the issue of the integrity of patient information and public confidence when it suggested that the two functions should be brought together. That was legislated for; here we are now, examining some of the details.

The noble Lord has already referred to the Select Committee’s disappointment about the way in which it considered this had been done in a rushed and piecemeal manner. I have no doubt the House will want to take account of the Minister’s response. It is a pity that the full statutory guidance is not available as we debate these regulations. I think, as a matter of principle, it would have been much more sensible if that had occurred.

The core issue is that in the passage of the Bill, and a number of noble Lords who are here took part in that debate, the Government gave assurances that governance arrangements would protect NHS England from marking its own homework, with independent oversight of governance decisions under the new arrangements. The noble Lord, Lord Kamall, the then Minister, said that

“I can assure your Lordships that the proposed transfer of functions from NHS Digital to NHS England would not in any way weaken the safeguards. Indeed, when I spoke to the person responsible in the department, who the noble Lords met, he was very clear that in fact we want to strengthen the safeguards and take them further.”—[Official Report, 5/4/22; cols. 2005-06.]

Having said that, when one comes to look at the arrangements, there are still some questions and doubts that we would like to put forward tonight. I pay tribute to medConfidential, which has raised questions on how some types of data will be handled under the new regime and whether, in pursuit of efficiencies, NHS England’s handling of the data will be less transparent and subject to fewer checks and balances. I think that expresses the issue and the potential tension in a nutshell.

This was reinforced by the comments of the National Data Guardian, to whom I pay tribute for her strong involvement in these matters. In December, Dr Nicola Byrne expressed concern that, in the statutory instrument before us, there is no recognition of the need to have independent oversight. She noted that provisions to obtain independent advice from specialists and experts to advise on and scrutinise NHS England’s exercise of its data functions, which were originally included in a previous draft of the SI, had been removed. She reminded the Government that the commitments to putting the current, non-statutory provisions safeguards regarding oversight into regulations had been made by officials to the House of Commons Science and Technology Committee. I understand from the briefing we received last night that the advice received by the Minister’s officials was that it is not possible, due to the nature of the statutory instrument and the original primary legislation. It is, though, a pity.

In relation to the membership of the Data Advisory Group, the National Data Guardian referred to the arguments put forward by the department for having NHS England representatives on the group present in their capacity as senior individuals with responsibility for data access. I think they are not full members, but they will be present. The department’s argument is that that will support more efficient discussions regarding applications for data access. I can see that, clearly, officials may need to make presentations. I think it is a bit of grey area when they are members, albeit not full members, of the actual group. The National Data Guardian reiterated that moving from a completely independent group to a hybrid model could affect public trust, particularly when advice is given and decisions are made on the internal uses of data.

We need to be clear why NHS Digital had an entirely independent oversight group. It was for very good reasons; it was put in place following the 2014 Partridge review which was conducted due to concerns about the way that patient data had been shared with insurance companies. There was a huge furore at the time. It was interesting that one of the resulting proposals after Partridge was the disbanding of an oversight group which involved staff members for a new independent oversight group. A public consultation in 2015 found support for this change. This is now being reversed. My fear is that something may go wrong with patient data and the department will come back and say, “Actually, we should make this an independent function”.

We have dealt with the issue of timing, and tonight the Minister has given an assurance that the outcome of the internal review into how well the transfer has gone will be made public—that will be very welcome. I will go just one step further and say that I hope the Minister may be prepared to brief parliamentarians on this at the same time.

The noble Lord also answered a question about social care that was asked in our briefing. I think he said there would be a person from a social care field on the group, which is definitely welcome. I suggest that discussions take place with the Local Government Association and the Association of Directors of Adult Social Services to make sure that they are fully involved and supportive of this happening.

So I remain of the view, as I have made clear, that it has been a mistake to bring NHS Digital into the NHS executive. Whatever the structure, one has to build in rigorous safeguards. The key here is the integrity and confidentiality of patient data. It is pretty clear that if the NHS is to be at all sustainable, it has to embrace the digital revolution and it has a long way to go. So I am right behind the Minister in what I know he is personally seeking to do. It is just that if anything that goes wrong with patient confidentiality, the whole thing can fall down. That is why this is so important. I very much look to the noble Lord and NHS England officials to ensure that we recognise that the integrity of personal patient information is important. I beg to move.

[Baroness Brinton (LD)]

My Lords, I echo the thanks of the noble Lord, Lord Hunt of Kings Heath, for the helpful and detailed discussions that the Minister, his predecessors and officials have had with the small group of us who have been worried about this issue, even before the Health and Care Bill started its passage through your Lordships’ House. Although some of us were more expert than others, and I was definitely not one of the expert members of the group, I care greatly about the digital revolution and ensuring that patient data is kept confidential.

The noble Lord, Lord Hunt, said that he supports improving and transforming data in the NHS. That cannot come soon enough. I have said before in this House, and it is still true probably a decade on from when I first said it here, that for my monthly blood tests I have to print out, photocopy and send copies to my hospital consultant because the hospital that I go to and the hospital that processes my blood tests do not use the same data system. That is ridiculous. It needs to change.

It is a real problem, as the noble Lord, Lord Hunt, set out, that the consultation and draft statutory guidance have been rushed through. I want to set that in the same context as that to which he referred, about perhaps going at a slightly slower pace while wanting the revolution to start. That might have been helpful. Omitting organisations such as the BMA from seeing the original statutory guidance raises the question: who else has not seen it? The question is almost impossible to answer. However, the detail of how this is going to work in practice inside the NHS will be the business of all clinical and administrative staff at all levels. It is vital that it works.

The Minister will know that I have repeatedly raised concerns about patient data and how people were not consulted in the two previous patient data and care.data communications. Both had to be held back because there has been outrage from the public that they were not given the chance to understand how their data would be used. Earlier this week, the Mirror reported that Matt Hancock had talked about handing over private patient medical records and the Covid test results of millions of UK residents to US data company Palantir fairly early on in the pandemic. It had offered to hold its data in its Foundry system, clean it and send it back to the NHS. I spoke about this in the Procurement Bill because I am concerned about how data can be kept truly confidential. Regarding the GP data for planning and research, the NHS has already published its federated data platform details, which is called by the Mirror the Palantir procurement prospectus. Perhaps I may ask the Minister, as an example of transparency for the new NHS England digital processes set out, whether organisations such as Palantir that are handling data records will absolutely not be permitted to use that data—even anonymised or deidentified—outside the purposes of the NHS, other than for agreed research being used in what my noble friend Lord Clement-Jones would say, if he were able to be in his place today, was a safe haven, thereby ensuring that that patient data remains completely confidential. The Minister knows, because I have said it before, that the problem is that in the past it has been possible to identify patient data when it was pseudonymised. I want confirmation that deidentifying really means that individuals cannot be tracked down and, most importantly, that the data will not be used elsewhere or sold on.

--- Later in debate ---

I have tried to answer most of the concerns. I will follow up in detail by writing. If we feel that there is anything that is still not secure enough, I am very happy to call a meeting so that we can go through it all. I thank noble Lords for their comments and for the spirit of the debate tonight. I again thank the noble Lord, Lord Hunt, for ensuring that we managed to cover those points, because we can all see the benefits of a common platform and the digital ability—the ability not to have to print out and fax or email your results—that could come. My letter bag is very full of loads of those sorts of cases, so we can all see the benefits, but at the same time maintaining public confidence is key. There is nothing that can ensure that a great utopian opportunity is a defeat snatched from the jaws of victory if the public do not have confidence in it. With that, I commend the Motion to the House.

[Lord Hunt of Kings Heath (Lab)]

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.

Amendment to the Motion withdrawn.