Health and Care Bill

Lord Clement-Jones Excerpts

Committee stage
Wednesday 9th February 2022 Lords Chamber

[Lord Clement-Jones (LD)]

My Lords, I support the noble Lord, Lord Hunt, in his very reasonable request for the Minister to confirm that a review will take place.

I remember that some 20 years ago I was challenging the noble Lord, Lord Hunt, when he was Health Minister. The pledge for single-sex wards had been made by his predecessor, the noble Baroness, Lady Jay. It was a very slow road towards single-sex wards. Reading Annex B, it seems that, suddenly, we are in a completely different place—the goalposts have been moved. I do not quite understand who was consulted about Annex B and where we go from here, in the face of completely different wording in the main guidance from the annex itself. How can one reconcile the gender-friendly Annex B with a single-sex broad pledge in the main guidance? At the very least, there needs to be a review of what exactly the regime is that we want to support? I entirely agree with noble Lords who believe that anyone who raises this issue should not be labelled in one way or another.

I was particularly concerned to see that, effectively, if you classify yourself as non-binary you can choose to go into a ward of any sex. I do not know that I see that in any equalities legislation or human rights legislation. That seems to me to be the hardest point. I cannot understand quite why that has appeared.

No purpose is served by lurid examples of this, that and the other. As a lawyer, I know that hard cases make bad law but, at the very least, the conflict between the main guidance and Annex B must be resolved in one way or another, clearly, and probably with parliamentary approval. It must conform with equalities legislation, and I hope that the Minister pledges to take that forward.

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[Lord Davies of Brixton (Lab)]

My Lords—

[Lord Clement-Jones (LD)]

Sorry, my Lords—I assumed that my noble friend Lady Brinton was going to speak next.

[The Principal Deputy Chairman of Committees (The Earl of Kinnoull) (CB)]

Thank you very much for reminding me. I am frightfully sorry. I invite the noble Baroness to make a speech now.

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[Lord Clement-Jones (LD)]

My Lords—

[Lord Davies of Brixton (Lab)]

My Lords, I want to speak to this group of amendments—

[Baroness Penn (Con)]

My Lords, it might be appropriate for the mover of one of the amendments in the group to speak.

[Lord Clement-Jones (LD)]

I was not being discourteous, but I thank the Minister. We just go along the line of amendments.

It is a pleasure to follow the noble Lord, Lord Hunt, and my noble friend Lady Brinton. Of course, we all recognise the benefits of using health data which arises in the course of treating patients in the NHS for research that will lead to new and improved treatments for disease and for the purposes of public health and health service planning. It has been a great benefit in helping to improve the treatment of Covid during the pandemic.

However, the track record of the department and the NHS in protecting patient data has not been a glorious one. We have heard a few examples. Let us go back to December 2019 and the discovery by Privacy International that the Department of Health and Social Care had agreed to give free access to NHS England health data to Amazon, allowing it to develop advertising and sell new products, applications, cloud-based services and/or distributed software.

My noble friend Lady Brinton talked about the successful case brought by openDemocracy and Foxglove against the department over a Covid-19 datastore deal with big data firm Palantir Technologies for failing to consider the impact of the deal on patients and the public by a consultation and performing a fresh data protection impact assessment on a new deal.

Then, of course, we had the situation last year, mentioned by the noble Lord, Lord Hunt, which has been described as

“the biggest data grab in the history of the health service”

of GP patient data. I pay tribute to the campaigners, including a group of Tower Hamlets GPs who refused to hand over patient data. Ministers first announced that implementation would be delayed until 1 September, and then in a letter to GPs in July last year put the whole scheme on hold, including data collection.

After this bungled approach—the noble Lord, Lord Hunt, used the word “debacle”, which is perhaps more apposite—more than 1 million people have now opted out of NHS data sharing. There is a deep worry here that the Government have learned nothing from the fate of the care.data project. The Government have now had to revise their approach, devise a simpler opt-out system and commit to the publication of a data impact assessment before data collection starts again. They have had to commit that access to GP data will be only via a trusted research environment and to a properly thought-through engagement and communications strategy.

Wade-Gery does acknowledge some of these concerns but if we are going to retain and build trust in the use of health data, we really need a clear governance framework. The Government must gain public trust through honesty, transparency and rigorous safeguards, and the individual must have the right to choose whether or not to share their data and understand how it will be used. I hope that NHSE—and, indeed, NHSD—will take on board the ICO’s recommendations in its audit report of NHS Test and Trace regarding governance and accountability and processor and third-party supplier relationship management, which looks at the policies and procedures that were introduced to keep data secure. There are some valuable lessons to be learned there.

As the noble Lord, Lord Hunt, has described, all health data must be held anonymously and accessed through an accredited data-access environment, designed to cover not only the promised trusted research environment but where data is used for planning purposes.

As to the detail of the amendments in this group, the noble Lord, Lord Hunt, has described them and the patient-centred intent behind them admirably. I will simply lay out the rationale for Amendment 305, tabled by me and supported, I am glad to say, by the noble Lord, Lord Hunt.

The data held by the NHS must be considered as a unique source of value held for national benefit. My noble friend Lady Brinton reinforced that. As it is, NHSE has refused to publish the list of projects and organisations to which it releases data. Retaining control over our publicly generated data, particularly health data, for planning, research and innovation is vital if the UK is to maintain its position as a leading life science economy and innovator.

Having read speeches by Ministers trumpeting the UK’s

“new, bold approach to international data transfers”,

debated the UK approach to data sharing, particularly in the context of the passage of the Medicines and Medical Devices Bill and the Trade Bill, and seen the wording of new international trade agreements, such as that with Japan, I am not at all confident about the Government’s approach to this. Emphasis in coverage of the UK-Japan agreement was placed upon championing

“the free flow of data”.

Health data in particular amounts to a significant national asset or resource with the potential to function as a dynamo in relation to research, innovation and the continued growth of the life sciences, health and care sectors.

It seems that the Government recognise this, but by the same token, we need a guarantee that our health data will be used in an ethical manner, assigned its true value and used for the benefit of UK healthcare. Any proceeds from data collaborations that the Government agree to, integral to any “replacement” or “new” trade deals, should be ring-fenced for investment in the health and care system with a sovereign health fund. It should have governance mechanisms, such as those set out by the Ada Lovelace Institute in Exploring Legal Mechanisms for Data Stewardship last year. Those are the right foundations for health data governance and that is why I have tabled Amendment 305A.

I am not greatly reassured by the recent announcement by the DCMS of the creation of the International Data Transfer Expert Council; it looks rather as though data protection will be low on its list of priorities.

[Baroness Tyler of Enfield (LD)]

My Lords, I rise to speak to Amendment 307 in my name. I am very grateful to the noble Baroness, Lady Finlay, and the noble Lord, Lord Warner, for adding their names to it. I am also grateful for the support already received from my noble friend Lady Brinton.

As I have argued in earlier debates on this Bill, it is a real problem that measures under Part 2 that aim to improve the sharing of information and data apply only to adults. This is despite the clear need to improve how children’s data is shared between health and social care and also between other agencies, including education and wider local services. The current absence of a single unique identifier makes identification of children who are in touch with multiple services very difficult and is a real barrier to joined-up support. My amendment seeks to address this glaring gap by requiring the Secretary of State to publish plans to use the NHS number as a single unique identifier for children.

Everyone in England and Wales is assigned a unique NHS number at birth or after the first time they interact with NHS services and that number is valid for life. Currently, the NHS number is used to store information on patients within healthcare records. However, we know that children and young people are frequently in contact with other agencies and services which are, more often than not, all using different identifiers. It is no wonder that too many children, including the most vulnerable, fall through the cracks, leading to the tragic and absolutely horrendous examples of extreme child cruelty and death that we have heard about recently.

The 2021 annual report on local children’s safeguarding practice reviews, previously known as serious case reviews, states:

“Much has been written about the continuing barriers to sharing information between safeguarding partners and we found that those issues remain and were highlighted in almost half of all reviews”—


I repeat: some 50% of the reviews.

Using the NHS number as a unique identifier would have the following benefits. It would reduce the risk of incorrect identification, improve multiagency working and improve care pathways. It would certainly ease the transition into adulthood, because the NHS number is for life. That NHS number stays with patients wherever they move within the country or between England and Wales. These are really important points.

A key finding of the House of Lords Public Services Committee report on child vulnerability was that

“in most local areas, services working with children are unable to match unique pupil identifiers on the national pupil database with children’s NHS numbers. This limits the ability of early intervention services to reach the most vulnerable children”.

Simon Kenny, the NHS England national clinical director for children and young people, added to these calls, stating that we “definitely” need a unique identifier, and that there needs to be

“a legal framework to enable it.”

This Bill provides just that opportunity.

Both the Children’s Commissioners—Anne Longfield, the previous Children’s Commissioner, and Dame Rachel de Souza—have supported the call for a single unique identifier number for children. I spoke with Anne Longfield about this only yesterday, and she described this approach as a force for good.

I finish by referring to a briefing from the Royal College of Paediatrics and Child Health, for which I am very grateful. It strongly supports a single unique identifier for children using the NHS number and says that it would be utterly transformative in how services address the needs of children and young people, particularly the most vulnerable.

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These four modest amendments before us this evening are intended simply to plug a gap and loophole in the current Clause 87. I beg to move.

[Lord Clement-Jones (LD)]

My Lords, I rise very briefly to speak to this amendment. I have considerable doubts about it. In relation to patient data, it looks like a possible thin end of a wedge—in fact, it might even be the thick end of a wedge.

I take this opportunity to come back to the Minister to add a query about the data governance regime which he has described this evening and into which we dipped our toe with the last group of amendments. My noble friend anticipated me in discussing the White Paper, which, in turn, follows from the Data Saves Lives draft strategy. I hope we will have the opportunity to meet the Minister to discuss this further because it is a very complex area.

I want to add to that conversation the fact that we variously have IGARD, CAG and the National Data Guardian for Health and Care—as well as NHS Digital, which we hope will remain separate, but we will come to that shortly. We have all these different bodies, but we need a simple regime which helps us understand, for instance, whether the Minister will say, “Yes, it’s already happening”, to the noble Baroness, Lady McIntosh, or, “No, it’s not going to happen.” I could not tell you the answer to that question in my current state of knowledge about the ability to transfer information across the health service and internationally.

There is a balance to be struck between the established protections and new provisions which might expedite the development of access to new and improved treatments and technologies—but it must be done in a safe way. I hope that, between Committee and Report, the Minister will take the opportunity to ensure that we have all the information we need on plans to perform a so-called reset of or new direction for—or however he might like to describe it—the NHS’s use of our health data.

[Lord Kamall (Con)]

I am grateful to the noble Baroness, Lady McIntosh, for bringing this discussion before the Committee. I also thank the noble Lord, Lord Clement-Jones, for his contribution. The information collected by the future medicine information systems has the potential to be used appropriately to support relevant research and improve the way in which we monitor medicines across the UK. However, once again, referring to the previous debate, we must be quite clear about whose data that is and the right to opt out.

Exchanging information with both national and international institutions is already integral to the MHRA’s post-market surveillance activities. Appropriate sharing of data from medicine information systems and medicine registries could also help support wider research to directly inform regulatory decision-making and to further support patient safety. Once again, we must respect patients’ concerns and their right to opt out.

The clause already provides the necessary power, by inserting new subsection (7A)(2)(c), enabling regulations to be made about the use and disclosure of information held within medicine information systems.

In regard to the noble Baroness’s admirable desire to ensure international co-operation with other bodies for post-market surveillance, medicines information systems will be established to support the MHRA developing medicine registries. As the regulatory authority, it is the MHRA’s international collaboration, rather than the information centres’, that will be key to supporting post-market surveillance. To ensure that this can continue, there are already specific powers in the Medicines and Medical Devices Act which enable the Secretary of State, and by extension the MHRA, to appropriately share information with international partners. Once again, going back to a previous debate, it is about what is an appropriate sharing of data.

As with medicines information systems, we already have sufficient legal powers to appropriately share. On the second element of this amendment, the existing provisions in Section 19, specifically Section 19(2)(c), enable regulations to address the use and disclosure of information held within medical devices information systems, providing an ability to appropriately share information within a future system. There will need to be careful consideration and consultation on the sharing and use of information, as we have previously said. However, there is a beneficial impact that the system could have in research and post-market surveillance.

In response to the specific question, I recognise the desire to see a system set up under the regulation-making powers in place, but given the importance of this matter, it is crucial—I hope that the noble Baroness reflects on the previous debate—that we take the time to get this right. Any regulations made under Section 19 and the wider system will need to be informed by extensive engagement and consultation, working closely with our partners in the devolved Administrations, so that they can deliver their full potential for patients and clinicians across the UK, taking account of the very real concerns raised about patient data. Once again, we are trying to get that balance right: better healthcare and better research feeding into health, but at the same time patients having the right to opt out.

NHS Digital is well placed to deliver and operate the medical devices information system. Alongside key partners, such as the devolved Administrations, we will consider how we can establish this system in a controlled, staged manner that builds on the confidence and momentum behind this issue.

Finally, I will be moving Amendment 306AA in my name. The amendment is supported by the Scottish Government; it is simply a clarification in wording. It makes clear that any powers or duties conferred on Scottish Ministers in relation to their role in collecting information for medicines information systems can be treated in the same way as other NHS powers or duties in Scotland and be delegated to health boards in Scotland. It is my sincere intent not only to respect the devolved settlement but to create the best possible system, one that will work UK-wide. This amendment supports that aim. It is for that reason that I ask noble Lords to support this amendment and invite my noble friend to withdraw hers.

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Moved by

[Lord Clement-Jones]

227: Clause 88, page 83, line 6, leave out paragraph (b)
Member’s explanatory statement
The Government has announced that it will be using the powers in this Clause to merge NHS Digital and NHSX to form part of the new Transformation Directorate within NHSE. The Health and Social Care Information Centre is an executive non-departmental public body created by statute, also known as NHS Digital. This amendment which would prevent this happening to the Health and Social Care Information Centre, is designed to probe what safeguards are being built in to protect patient data.

[Lord Clement-Jones (LD)]

My Lords, it is regrettable that we are dealing with the very important Clauses 88 and 89 at this time of night—and obviously it is regrettable that the House has to have me as a poor substitute for the noble Lord, Lord Hunt.

These amendments relate to the abolition of the Health and Social Care Information Centre and the implications for the integrity of patient data. Clauses 88 and 89 give the Secretary of State powers through regulations to transfer a function from one relevant body to another, and the relevant bodies are defined as Health Education England, the Health and Social Care Information Centre, the Health Research Authority, the Human Fertilisation and Embryology Authority, the Human Tissue Authority and NHS England. Other than NHS England, each of those bodies can be abolished under the clause as the result of a transfer of functions.

Amendment 227 to Clause 88 refers to the abolition of the Health and Social Care Information Centre. The Government have announced that they will be using the powers in that clause to merge NHS Digital to form part of the new transformation directorate within NHSE, and of course we have seen that NHSX has now been abolished and the relevant personnel have moved into the transformation directorate. The Health and Social Care Information Centre is an executive non-departmental public body created by statute, usually known by the term “NHS Digital”. This amendment, which would prevent that from happening to the HSCIC, is designed to ensure that NHS Digital continues as an entity to safeguard patient data. The merger of NHS Digital with NHSE risks losing the skills and experience that currently sit within NHS Digital. I have mentioned that NHSX has ceased to exist.

There are two risks for patients. One is that important knowledge and skills will be lost as talented people leave the organisation and time is devoted to the nuts and bolts of making the organisation function rather than on achieving its aims. The other is that the new merged organisation will just be too big and unwieldy to respond in an agile way to major challenges such as workforce planning and digital innovation. If NHSE leaders understand how important these challenges are then they will be able to prioritise them and make them part of the organisation’s core function.

I turn to the functions of the statutory safe havens in relation to Clause 89. Part 9 in Chapter 2 of the Health and Social Care Act 2012 lays out the functions and obligations of what is described as the statutory safe haven for patient data from across the health and social care system required for the production of national statistics and for commissioning, regulatory and research purposes, in addition to supporting patient care. Amendment 228 seeks to keep these statutory protections in place and ensure that NHS England does not take on that responsibility, because of a potential conflict of interest in its role.

The bottom line is that we need to retain NHS Digital’s statutory safe haven functions separate from NHS England. As the BMA has said, it is of the utmost importance to retain a quasi-autonomous body for the purposes of collecting, storing and distributing sensitive patient data—something that would be lost under a merger of NHSD and NHSE.

There is one other major advantage of keeping NHS Digital as the digital safe haven. The statutory safe haven’s legal name is the Health and Social Care Information Centre, so there is some obligation to social care. NHSD has always given some thought to integration, even when there was very little on the social care side to integrate with, and little interest from NHSE in doing that work itself. If it all gets merged into NHSE then how will the obligation to collect social care data continue to exist, since NHSE’s responsibility is to the NHS? If this transfer of functions takes place, who will be responsible for the national collection of social care data? Each bit of the social care world will see NHSE as a different entity from NHS Digital. What are the Government’s joining-up plans in respect of the future governance of this kind of data? I beg to move.

[Lord Patel (CB)]

My Lords, I shall speak to my Amendments 229 and 230. I thank the noble Lord, Lord Hunt of Kings Heath, and the noble Baroness, Lady Walmsley, for adding their names to them. The House of Lords Constitution Committee report on the Bill raises serious concerns about the range of Secretary of State powers in the Bill and concludes that these new powers, coupled with new powers for the Secretary of State of oversight, delegation and transfer of function,

“could alter the balance between the Government’s constitutional responsibility for the provision of health care and providers’ ability to function in a manner that can respond effectively to local needs. It also risks undermining accountability by making it more difficult to understand which body is responsible for a particular function of the NHS.”

That is a claim that we must take seriously.

All the amendments in the group are important but, as has already been said, the hour is late and we need to rush so we cannot discuss them fully.

As the Bill is drafted, the Secretary of State would have the power to confer, abolish or change the function of a list of bodies that includes NHS England, Health Education England and the Human Fertilisation and Embryology Authority, to name but a few. One safeguard included in the Bill in relation to NHS England is that the Secretary of State would stop short of changes that would make NHS England redundant—but “redundant” is not defined. However, nothing on the face of the Bill sets out how high or low that bar would be set.

I recognise the logic of the Secretary of State having powers to confer responsibilities on arm’s-length bodies via secondary legislation. However, these new powers are far more extensive than that, and there is a real danger that their application could threaten the operational independence of key parts of the NHS. The Secretary of State should not have the power to abolish a body such as the Human Fertilisation and Embryology Authority, or to transfer the majority of its powers. Health Education England and the Health Research Authority were established through the Care Act 2014. If the Secretary of State believes that any of these bodies should be abolished or have functions removed, Parliament should have the opportunity to debate and understand why he desires to take that action, hence my amendment to reduce the scope of these powers and remove the Secretary of State’s powers.

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This Bill is evolutionary, not revolutionary; it builds on many changes, and we believe that blocking the implementation of its key elements could do more harm—completely the opposite effect, I am sure, to those intended by noble Lords in this amendment. For these reasons, I ask the noble Lord to withdraw his amendment and other noble Lords not to press theirs on all these issues, but if further discussion is needed, I am happy to come back.

[Lord Clement-Jones (LD)]

My Lords, the Minister will probably get the “Just a Minute” prize for the evening. I will not try to reply to all the amendments, purely those tabled by the noble Lord, Lord Hunt, to which I have spoken. However, if ever I saw candidates for return on Report, they are those in this part of the Bill, in all respects that have been spoken to this evening. This is an extremely unsatisfactory part of the Bill, which gives far too much power to the Secretary of State.

However, I thank the Minister for his response. He looked rather baffled when I spoke to Amendments 227 and 228—perhaps because Dr Wade-Gery, who is its chair, unaccountably suggested that she did not really understand the dual function of NHS Digital. It is rather extraordinary. It is a dual function; neither I nor the noble Lord, Lord Hunt, have any quarrel with the transfer of digital capabilities to NHS England—it is the safe haven aspects, a really important second function of NHS Digital, that we object to. In moving all the data across to NHS England, it will no longer have the independence and objectivity of NHS Digital. It is a really backwards step in data governance.

We can have the digital transformation and data-analytical capabilities within NHS England, but I fear we will not have the same safeguarding of the actual data that we have at the moment. Even that is not satisfactory, as the Minister has heard this evening. That said, we will no doubt return to that in conversation and I beg leave to withdraw Amendment 227.

Amendment 227 withdrawn.