Health and Social Care Information Centre (Transfer of Functions, Abolition and Transitional Provisions) Regulations 2023
(1 year, 3 months ago)
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Lord Markham
That the draft Regulations laid before the House on 15 December 2022 be approved.
Relevant document: 25th Report from the Secondary Legislation Scrutiny Committee (special attention drawn to the instrument).
The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Markham) (Con)
My Lords, to make sure that all noble Lords have the right version of this SI, I draw attention to the correction slip amending two points:
“Page 3, regulation 5(3)(a): omit ‘annual’; and Page 22 … paragraph 63(a): ‘…paragraph (b);’ should read ‘…paragraph (a);’.”
These regulations are intended to transfer the statutory functions of the Health and Social Care Information Centre, which operates as NHS Digital, to NHS England, and to abolish NHS Digital. This will create a central authority responsible for all elements of digital technology, data and transformation for the NHS, which was a key recommendation of the review by Laura Wade-Gery into how we can improve the digital transformation of the NHS. The recommendations were accepted by the Government in November 2021; we announced that we would merge NHS Digital into NHS England as soon as legislation allowed.
I know that noble Lords had concerns about this transfer during the passage of the Health and Care Bill last year, which we have sought to address. I will also seek to address the points raised by the report of the Secondary Legislation Scrutiny Committee, which are echoed in the regret amendment tabled by the noble Lord, Lord Hunt.
First, I reassure this House that the transfer will not weaken the existing protections of people’s data and that the protection of data remains a priority for NHS England, which at senior levels takes these new responsibilities very seriously. All statutory functions of NHS Digital relating to the protection of data are being transferred, including the rules and safeguards required by law. This has been a guiding principle. NHS England will be subject to the same rules on collecting and disseminating data as are applied to NHS Digital.
NHS England can establish an information system only when directed by the Secretary of State or in response to a request from another body. All directions and requests that NHS England complies with must be published, so there is full transparency on what is being collected and for what purposes, and a clear upfront control. It cannot exceed the requirements of the direction or request. It must also publish its procedures for receiving and considering requests to establish information systems and for requests to access data. NHS England will report annually on how effectively it has discharged its transferred data functions, seeking independent advice to inform this report and consulting with the National Data Guardian for their views.
Concerns were raised during the passage of the Bill that we would lose the excellent practice that NHS Digital has followed in protecting people’s data and the crucial separation between those responsible for collecting and de-identifying data and those in NHS England analysing it. We therefore committed to place further requirements on NHS England, alongside the transfer of statutory functions, to ensure it would be a safe haven for data via statutory guidance. This is a new requirement.
This statutory guidance sets out measures that we expect NHS England to protect confidential information. There was some disquiet that the guidance did not seem to go far enough and that we had not added new duties to the regulations. This was not considered necessary; this is a straightforward transfer of functions under a legal framework which goes back to 2012 and has stood the test of time. That framework includes duties under the 2012 Act to have regard to various matters such as the need to respect people and promote the privacy of service users.
Additionally, we will issue statutory guidance, and I will come on to its contents in a moment. NHS England must have regard to this guidance; that means that it would have to demonstrate that it had justification for any decision not to follow it. Case law has shown that clear and cogent reasons would be needed to depart from guidance which is subject to a statutory duty to have regard. However, we have added strength here, as there is also a new power of direction, introduced in the Health and Care Act 2022, which could be used in cases of non-compliance with the guidance—namely, in Section 13ZC of the NHS Act 2006. Together, these mechanisms create a strong, binding commitment on NHS England to maintain the highest levels of data protection and safeguards.
NHSE is a long-established public authority which is experienced in processing personal data, including that of patients and employees. It does so in accordance with a robust legal framework which includes UK GPDR and the Data Protection Act. The lawful and proper treatment of personal data by NHS England is extremely important to maintain the confidence of service users and employees, and NHS England is well versed in processing personal data lawfully and correctly. It is aware of the importance of seeking independent advice and will be able to do so where necessary, including on the recommendation of staff transferring from NHS Digital. NHS England will also be able to approach the Information Commissioner’s Office as the independent regulatory body if it needs an independent view on particular matters.
I also reassure noble Lords that this statutory guidance covers all confidential information as defined in Section 263(2) of the 2012 Act. Therefore, it covers all data identifying an individual and all data identifying an individual which is subsequently identified or pseudonymised where an organisation, including NHS England, holds both the de-identified data and other data which would enable reidentification.
The guidance requires NHS England to obtain independent expert advice on its data access processes and procedures and, where appropriate, on individual decisions around data access. This will enable these experts to provide advice and assurance for both external and internal requests for access to data for purposes other than direct care. NHS England will be required to secure this independent advice or have a very good reason for not doing so. It is not optional or a case of doing so only when convenient.
Central to this should be a data advisory group, comprising appropriate experts and lay members, including one or more members with expertise in social care. This last point is not currently spelled out by the draft guidance, which we will amend. It would be appropriate for some internal representation to support this group to add expert knowledge and insight, such as the organisation’s Caldicott Guardian and data protection officer. However, the majority of members should be independent advisers. Minutes of the data advisory group meetings should also be published.
I know that some noble Lords have been concerned that NHS England will receive data which is still identifiable and which NHS Digital would previously have de-identified before sharing. The statutory guidance requires that the organisation will de-identify data before its internal analysis and use—the same role which NHS Digital undertook previously will be done internally, by a team separate from those who need to use the data. It explicitly states that responsibilities and accountabilities for using the data should be organisationally separate from the functions providing assurance and advice on this, such as information governance and Caldicott Guardian functions, to ensure that there are no conflicts of interest.
NHS England must ensure that there is the right governance for considering internal requests to access data, based on the same principles of risk-based assessment as for external requests for data, and drawing on the same independent scrutiny and advice. Furthermore, the Secretary of State will issue a direction in relation to NHS England’s internal use of data, which will be published. This will make clear the legal responsibility for NHS England to de-identify data before analysis, so that an individual cannot be directly identified either from the data to be accessed or analysed from the results of the analysis carried out. The guidance also calls for NHS England to develop a register of internal data uses mirroring that which currently exists for external data uses.
In response to the concerns of the Secondary Legislation Scrutiny Committee, although we are moving at pace, we are doing so because we are keen to see the benefits of creating a single statutory body responsible for data and digital technology for the NHS delivered quickly. The statutory guidance has been neither rushed nor piecemeal in development. The guidance has been in development for a number of months; a version was shared with some noble Lords and stakeholders before Christmas, and we have been discussing it with stakeholders—including the National Data Guardian, the Information Commissioner’s Office, NHS Digital and NHS England—revising it to reflect their comments and strengthening the requirements on internal use of data, which was a predominant concern.
We have now published the second draft, which we have drawn to the attention of noble Lords. This was also shared with the Secondary Legislation Scrutiny Committee and the British Medical Association and other professional organisations, to seek their feedback. I am sorry that we did not share the guidance before with the BMA.
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.
Baroness Finlay of Llandaff (CB)
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.
Lord Allan of Hallam (LD)
My Lords, I am grateful to the noble Lord, Lord Hunt, for ensuring that we have an opportunity to debate this statutory instrument. I am also grateful to the Minister for both his initial response to the amendment and the time that he and his officials have spent responding to queries from me and my noble friends Lady Brinton and Lord Clement-Jones.
I revealed in yesterday’s debate how I started my tech career in the Avon Family Health Services Authority. From there, I moved to the FHS Computer Unit and worked on national NHS IT, so this reorganisation has a special interest for me. The subsequent path of the system that I worked with, which was called the Exeter system because the developer hub was in Exeter, is illustrative of the constant reorganisation of NHS IT, of which the latest example is in front of us today; I note in passing that early versions of the Exeter system were written in a language called MUMPS, like the disease but in capital letters, proving that geeks do have a sense of humour. The FHSCU was incorporated into something called the NHS Information Authority, which was then split between the National Programme for IT—NPfIT—and the Health and Social Care Information Centre. NPfIT was later rebadged as Connecting for Health, while the Health and Social Care Information Centre found its way, via a couple more name changes, into NHS Digital; this was referred to by the noble Baroness, Lady Finlay of Llandaff.
It can feel like the architects of these reorganisations have drawn inspiration from peristalsis, the process that moves food through the body by contracting and expanding the gut. The belief seems to be that we can make progress with NHS IT by pulling everything to the centre then pushing it out again to the edges in a cycle of rinse and repeat. I fully expect us to be back here in a few years’ time being told that we have lost focus by pulling everything into NHS England and that we need to create some kind of new stand-alone agency. We might call that new body the Unified Trust Operational Process Information Agency, or UTOPIA for short—there is some free branding advice for the Government.
The serious point here is that, in spite of—or perhaps because of—these reorganisations, the NHS still has information systems that fall well short of what is possible and desirable. There are many excellent people who work in NHS IT, and there are examples of great systems being developed, but we cannot say that there is consistent excellence, which is what the service needs and deserves, as noble Lords have said. I sincerely hope that we might get it right in the public interest this time, but experience suggests that we should remain cautious and test thoroughly what we are being offered.
An early test for this new structure will be the mega contract that has just been opened up for bids to provide a federated data platform, to which my noble friend Lady Brinton referred and which looks like it will cost the taxpayer at least £500 million; that is the number on the face of the contract, and God knows what else will need be spent by trusts on ancillary services. We will be asking searching questions of the Minister at all stages of the development of this project, as some elements are already triggering the spidey-sense of those of us who have seen too many big NHS IT projects go south—by which I do not mean going to Exeter but further than that.
As well as the structural questions about whether this reorganisation will achieve its core purpose of improving IT support for health and social care, there are concerns about what it will mean for the treatment of personal data. The noble Lord, Lord Hunt, and my noble friend Lady Brinton have done a thorough job in describing those concerns so I will not repeat their arguments in detail. However, I want to reinforce their emphasis on the importance of independent oversight. I have worked in technology organisations and have huge admiration for the way in which software engineers, researchers and data scientists tackle problems using data, but their deep focus on addressing problems is not always accompanied by the same level of interest in documenting and getting approvals for all of their uses of data. This is not usually because they are doing anything wrong but because they are in a hurry to explore a task that we have given them. Given this tendency, it is essential that we put in place good governance systems that do not get in the way of necessary uses of data but ensure both that these are properly considered and that any risks are surfaced and mitigated.
As other noble Lords have argued, the IGARD system, which worked for NHS Digital, has broad support. We need something equivalent in this new structure. I ask for the Minister also to consider additional forms of transparency that will help people have confidence that data is being used appropriately. The overriding principle here is that you do not want people to feel surprised that particular kinds of data are being collected or used for particular purposes. A healthy discipline that will help avoid surprises is to ensure that the data schema and software code are made public, as this allows third parties to see for themselves what is going on inside the black box. This is not about publishing all the data held in the databases, which needs to be managed separately; it is about showing the kinds of data that sit in different systems and informing us what the systems are doing with them.
There is a common trope that Governments like to trot out to reassure the public and show that something is safe: putting in place a triple lock. This is part of the Government’s rhetoric around the Online Safety Bill, for example. I invite the Minister tonight to commit to a quadruple lock in this case, given the importance and sensitivity of health and social care data. Lock 1 is the commitment to meeting fully all the data protection standards that are already in place for NHS Digital and in the general data protection regulation. Lock 2 is to ensure there is a truly independent body assessing and authorising requests to use data. Lock 3 is the publication of data schema so that we can see the full extent of what is being held, and where. Lock 4 is the publication of code that will allow people to check that what was authorised is what has actually happened.
I hope that this reorganisation will both lead to positive technology outcomes and avoid negative data outcomes. The NHS needs success in these areas more than ever. I also hope that the Minister will agree that our scepticism on these Benches is healthy and makes it more, not less, likely that we will see those outcomes. Onward to UTOPIA.
Baroness Merron (Lab)
My Lords, I thank the Minister for introducing these regulations and for the assurances he has given your Lordships’ House. I also express my appreciation to my noble friend Lord Hunt for what, as other noble Lords have said, was an extremely detailed and helpful examination of the challenges that these regulations present. I hope that the Minister will take his amendment and this debate in the spirit which I know is intended.
I share the view of all noble Lords who have spoken this evening that digital transformation of the NHS is a good thing; on that we are agreed. We all support the use of information to make things better for patients. However, this is about getting it right, and I hope that the debate this evening has contributed greatly to that. It is about confidence. As the noble Lord, Lord Allan, just said, people should not be surprised. They should also not find themselves compromised, uncertain or in any way undermined by the use or misuse of data. That is the challenge before us.
Lord Markham (Con)
I thank noble Lords for their contributions and agree that we are all trying to achieve the same thing: to ensure the digital benefits come from this system and maybe—who knows?—create a UTOPIA, but also, vitally, maintain confidence. I take all these comments in the helpful spirit in which they are intended, and I hope that noble Lords will like my replies. At the same time, anything that I do not properly cover now—I suspect there will be some things I am not able to cover—I will, as ever, follow up on in detail in writing. Such is the importance of this that I am happy to meet again as well. The various meetings that we have had have been very productive, so I will make sure that those written answers come out quickly. I invite noble Lords to please come back if they feel there are some bits that still need further clarification. I will definitely set that up quickly and ensure that the officials are there as well. I have had various bits of feedback from the officials—I have tried to be engaged all the way through this. As the noble Baroness, Lady Merron, said, we have tried to get this right. I accept that we have not always done it perfectly, but I hope noble Lords can see that the good will is there.
On the specific questions asked by the noble Lord, Lord Hunt, I agree not only to publish the review but, happily, to brief Parliament on that. On the idea of including the LGA in the composition, I am very happy to do that. Regarding the points made by the noble Baroness, Lady Brinton, on the ability to use Palantir outside of the agreed research, the intent is absolutely that it can be used only for the agreed purposes and it cannot be used or sold elsewhere without suitable agreement. Again, the annual report will address how well it is working in practice.
I hope that the merger will not be like the PHE closure. I think they have been working on the new timing, in terms of February, since October, when it was announced, and have been working with the staff on that timing. I know that the plans that I have seen have taken into account the ability or need to retain people, which is obviously crucial to this, as we know that you need additional skills in this space and the importance of retaining them.
On the questions asked by the noble Baroness, Lady Finlay, my understanding regarding Wales—and I will make sure that this is followed up properly in writing—is that it has consented to the transfer arrangements in this. Generally, NHS England will continue to play the same role it has currently; that has been agreed. I entirely take and accept her point about the hacking risk, that the more attractive you make the data pool, for want of a better word, obviously the more essential it is to make sure that security and protections are in place.
As ever, I enjoyed the points made by the noble Lord, Lord Allan. He was talking about UTOPIA. He mentioned the geeks, and I am sure he is aware that that word came out of the Second World War, when they were looking for general engineering and electrical knowledge in their recruitment of soldiers, so that is one for him. Going forward, those extra forms of transparency and the quadruple lock all sound very sensible to me. I had a quick note from my team, saying that they also thought that it sounded sensible. Again, I think that we will probably need to put some detail around that, but I thank the noble Lord for those suggestions. Let us try to make sure that we work with those.
I absolutely take all the points made by the noble Baroness, Lady Merron, again, in the spirit in which they are intended. I do not think that I have a good answer to the “marking their own homework” point, to be fair. I hope that the noble Baroness knows me well enough to know that I will never try to argue that black is white from where we are. I think that is, quite rightly, the concern that all noble Lords have raised tonight, and it is obviously these protections, such as the quadruple lock and the other things that we need to put in place, that we need to make sure are there.
On the kind of things mentioned, the advice and the minutes from the meetings and the advice given by the independent groups—absolutely. I spent a bit of time today on how we would involve the ICSs, and my understanding—again, I freely admit my understanding is probably at GCSE level right now, so I need to do a bit more work on this—is that a lot of this is around the data standards that the ICSs are starting to deploy to make sure that the formatting of the data is correct so that everything can be kept in this common data warehouse. That is something that they are working on already, in terms of establishing those standards. A number of trusts have worked towards that, accepting that it cannot be completely finalised until we know who is going to win the tender for it.
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.