Health and Care Bill (Thirteenth sitting)

Alex Norris Excerpts

Committee stage
Tuesday 19th October 2021 Public Bill Committees

[Edward Argar]

It is a pleasure to serve under your chairmanship, Mr Bone. As a member of the Government, I am well aware that seeking to curry favour with you in the Chair is a futile task, but none the less I wish you a happy birthday.

The amendments ensure that the drafting of the clauses covers all healthcare, whether delivered by public bodies or by the independent sector on behalf of the NHS or not, and that the relevant persons are captured by the requirement to comply with information standards. Those are matters of technical detail, and ensure that the changes made by clause 79 are coherent and consistent.

Amendment 117 makes minor changes so that information standards can apply to public bodies that exercise functions in connection with the provision of healthcare in England. It ensures that information standards can be applied to public bodies, even if the healthcare is not provided as part of the NHS. Similarly, amendment 118 ensures that information standards can apply in the processing of non-NHS and NHS healthcare information.

Amendments 119, 120 and 121 make consequential changes as a result of the previous amendments. Without those changes, there could be uncertainty about whether information standards can be applied to healthcare information generated outside the NHS. Without the amendments, we might not be able to ensure that data relating to NHS services—such as data about services provided in private patient units or by independent sector providers—flows through the system in a standardised way so that it is always meaningful and easy to understand for any recipient or user.

Clause 79 amends the Health and Social Care Act 2012. It allows the publication of mandatory information standards relating to the processing of information, including its transfer, collection and storage. Health and adult social care providers must currently have regard to information standards, but the clause would require providers to comply with them. The clause allows for the application of mandatory information standards to private providers as well. It requires regulations to be made about procedures for creating information standards. The clause also includes a power to require information from providers for the purpose of monitoring compliance with information standards.

The measures will help ensure that information flows through the system in a standardised way so that it is easily accessible and useful, and they will help to ensure the security of that information when it is processed. Given that publicly funded providers are already required to have regard to information standards, the clause will cause minimal disruption to compliant providers but will enhance the Department’s ability, on behalf of the public, to deal effectively with cases of non-compliance.

By applying information standards to private providers, the clause aims to improve the experience of patients who move between publicly and privately funded services by their own choice, such as individuals who choose elective surgery by a private provider. It does that by enabling the setting of standards that encourage the frictionless movement of information between those providers, with the aim of supporting timely and appropriate patient care decisions.

We consider the clause a crucial enabler for the creation in its broadest sense of a modern heath and care service whose systems are integrated and responsive to the needs of patients and users. I commend it to the Committee.

[Alex Norris (Nottingham North) (Lab/Co-op)]

It is a pleasure to resume proceedings on the Bill with you in the Chair, Mr Bone. I would extend birthday greetings to you, but I know that Tom Brady and the Tampa Bay Buccaneers are already giving you all the joy that you need at this time of the year.

[The Chair]

That has more influence.

[Alex Norris]

I thought that might get more traction with you.

I also take the opportunity on behalf of Opposition Members to pass our sincere condolences to Government Members and to pay tribute to our friend Sir David Amess. He was a wonderful man: funny, kind and caring. I say that now because my final conversation with him was about the Bill, which precluded me from joining him on a trip. He commended me on my diligence but also cautioned me not to work too hard. I will always remember that; it was classic David.

As the Minister said, we have reached the data part of the Bill. It is important for everything we talked about in part 1, because all the new cultures that we seek to foster will fall over if the data does not work and, as he said, flow freely back and forth between organisations. At the end of the day, ensuring that data can port between different organisations is our problem to solve, not that of the patient or the individual. Therefore, if we are to have properly joined-up care, it is vital that those who provide care have a full sense of who they are caring for and what is needed.

I will not cover the Opposition’s really good amendment to the next clause, which would improve it further, until we get to it. In that spirit, we do not intend to divide the Committee on this group of amendments or on the clause more generally, but I have a couple of points to address, which I hope the Minister might come to in his summing up.

On the clause in general, the Opposition support putting the entire health and care system on the same footing for information standards. As we heard in oral evidence, one of the major blockers is the myriad data systems used across the health and care landscape, many of which cannot talk to each other. When I was an adult services portfolio holder in my local council, I saw how hard it was sometimes even for council systems to talk to each other—I do not know whether that was remarkable or inevitable—never mind systems across different organisations and, in this case, the public, private, and community and voluntary sectors. That is a real challenge. I do not think we can remove that completely—systems may look different because of their different purposes—but there must be some attempt to standardise.

The Opposition do not oppose the clause, but proposed new section 6B in subsection 2(c) allows organisations to opt out—we might want organisations to be able to do that in some circumstances—and proposed new section 6C provides that regulations will cover when that is allowable. However, it is hard to know whether the clause will work until we have seen whether the regulations are strong enough and set a high enough bar on opting out. Will the Minister confirm that the measure allowing for opting out will be very much exceptional and that we will not see any nonsense about commercial confidentiality? We want data to flow across sectors, and that confidentiality has traditionally been one of the barriers to that.

Let me turn to Government amendments 117 and 118, which will expand the scope of the organisations covered. That is good. If we are to share data between social care and more traditional healthcare services, that includes a big landscape of non-NHS providers and perhaps even non-local authority providers, and it is right that information standards should be aligned. There must be a common basis on which to build. The Minister said that in general most organisations are probably already in that space and paying the due regard that they need to, but I fear that these things will be easier in concept than in execution. I am keen to learn what assessment the Minister and his officials have made of how ready the disparate providers in this landscape are to meet these new requirements, whether he thinks there will be a transition period, and whether providers will be helped to do this. Otherwise, the implementation of this strong concept in the Bill will not work. I hope the Minister can address that.

[Edward Argar]

May I put on record my gratitude to the hon. Gentleman for his kind words about our late colleague? I suspect that the Health team and the shadow Health team will also speak of him in oral questions in the Chamber in a little while. The hon. Gentleman’s anecdote was all too typical of Sir David and his approach to these things. I think the last time I spoke to Sir David was at our party conference; I had to do something on the platform, and he seemed mildly bemused by the fact that I was rushing off to have my make-up done before I went before the cameras. He then insisted on posing for a photograph with me. It was typical of him. We all miss him terribly in this place, as of course, most importantly, will his wife.

I am also grateful to the hon. Gentleman for his support, in broad terms, for clause 79 and the Government amendments. He is absolutely right about the importance of data flowing freely and safely for the benefit of patients. That is why the clause strengthens the wording of the Health and Social Care Act 2012, so that it says “must…have regard to” and “must…comply with”.

The hon. Gentleman asked a number of questions. First, he talked about the option of opting out from regulations. I can offer him reassurance on that; yes, I hope that its use would be exceptional, rather than the rule. Our assessment is that there is already widespread compliance with what we are seeking to do here, but as he rightly says, we have to make sure that we have as robust a framework as possible, because it is up to us to make this work for the patient, rather than their having to work their way around a challenging framework.

The hon. Gentleman’s final point was about the burden of execution. He is absolutely right; as we all know in this place, and from our previous careers in local government—we talk about this a lot—something can look immaculately thought-through and put together on paper, but when we hit the reality of practical implementation, there can be significant challenges. It is not our assessment that there will be significant burdens or challenges with implementation; I go back to my point that our understanding is that the vast majority of these requirements are already adhered to. However, I am happy to keep the matter under review, and to make sure that we tweak the implementation if we need to, and are sensitive to the reality on the ground.

Let me put a bit more flesh on the bones on the subject of the waiver—the opt-out, as it were—as we may touch on the subject when we come to the hon. Gentleman’s later amendments and in subsequent clauses. The thinking behind the waiver is that there may be circumstances in which an organisation feels that it genuinely cannot meet a published information standard that applies to it. That is why there is the waiver power. It could apply to use it, but that request would have to be considered very carefully by officials before it was granted.

I hope that I have given the hon. Gentleman some reassurance, but he knows, I hope, that I seek to be pragmatic in much of what I do, and in the implementation of the provisions, I will seek to apply a degree of common-sense pragmatism.

Amendment 117 agreed to.

Amendments made: 118, in clause 79, page 69, line 21, at end insert—

“(aa) in subsection (3), for ‘services’ substitute ‘care’;”.

This amendment makes it clear that the Secretary of State’s power to set information standards extends to information concerning health care other than NHS care.

Amendment 119, in clause 79, page 70, line 2, at end insert—

“(d) in subsection (7)—

(i) at the appropriate place insert—

‘health care’ includes all forms of health care whether relating to physical or mental health and also includes procedures that are similar to forms of medical or surgical care but are not provided in connection with a medical condition;”;

(ii) omit the definition of ‘health services’.”

This amendment is consequential on Amendments 117 and 118.

Amendment 120, in clause 79, page 70, line 29, at end insert—

“(3A) In section 251C (continuity of information: interpretation)—

(a) after subsection (6) insert—

‘(6A) “Health services” means services which must or may be provided as part of the health service in England; and for that purpose “the health service” has the same meaning as in the National Health Service Act 2006 (see section 275(1) of that Act).’;

(b) for subsection (7) substitute—

‘(7) Adult social care’ and ‘public body’ have the same meaning as in section 250; and ‘processes’ and ‘processed’ are to be read in accordance with the meaning of ‘processing’ in that section.” —(Edward Argar.)

This amendment is consequential on Amendment 119.

Clause 79, as amended, ordered to stand part of the Bill.

Clause 80

Sharing anonymous health and social care information

[Alex Norris]

I beg to move amendment 109, in clause 80, page 71, line 15, at end insert—

“(4A) Before the power in subsection (1) may be exercised, and every five years thereafter, the Secretary of State must review, and lay before Parliament a report of that review, the possibility of combining the exercise of that power with the exercise of the powers under which—

(a) the General Practice Data for Planning and Research programme, and

(b) other data-sharing programmes

are run.”

I am moving this amendment in my name and those of my colleagues. There has been some disappointment that on part 1 of the Bill we have not been able to move the Government particularly far from what was originally presented in the Bill. As has been said a number of times, this Bill ought to drive integration in health and care services, but instead we really have a reorganisation Bill, with a promise from the Prime Minister to return with an integration White Paper in due course—when presumably some configuration of all of us will come back and do all this again. It is hard to think that we have not left some opportunities on the table, so I hope we can do better on parts 2 to 5 of the Bill, and I do not think there is a better place to start on that than amendment 109, which would significantly help the Government with an issue that they have been struggling with for more than a decade.

It is obligatory for Health Ministers and shadow Health Ministers to start by saying that data saves lives, and it does. It tells us what is happening in our communities and our country and how we may need to change services to meet the needs of populations. But if it is done right, it can also tell us what will happen in the future and what future needs we will have to meet. For the purposes of designing health and care services, that is golden information. It gives us the chance to get ahead of the curve, to make good early investments and to avoid dreadful workforce gaps, which we are seeing at the moment and which have been created over the last decade.

We are fortunate that there is no country in the world better set up for high-class use of data than ourselves. We have a single health system in each of the four nations covering our entire populations. Of course, our data is spread over more places than simply NHS databases. If we can get it organised, we ought to have the most rich understanding of our population’s health and of the outlook for the future. What an extraordinary gift that is, but we are not using it effectively enough at the moment and we can do much better.

I remember, early in my stint as shadow Public Health Minister, meeting a group of dentists, one of whom said to me that they can not infrequently recognise the signs of certain eating disorders by the impact that frequent vomiting has on the back of a person’s—in these cases, generally a young person’s—teeth. They found it hard to understand why they had no idea whether anyone else who provided care for that individual, or perhaps even the individual themselves, knew that that had happened, because they had absolutely no broader healthcare information about the person. Of course, there are important circumstances in which we need to create firewalls to protect privacy, and we would want people to have only the information that they needed to do their job properly, but in this case the clinician felt like they were flying blind and unable to provide the very best care for this person as a whole person rather than caring just for the teeth of the person.

As an Opposition, we want to see data used well, wisely and in an integrated manner, and if there has really been only token integration in part 1 of the Bill, why not see the real thing in part 2? As I have said, the history here for the Government is chequered. Only this summer, through the General Practice Data for Planning and Research programme, the Government sought, with a characteristic, I might say, lack of touch, to grab all the data from England’s GPs without explaining to patients why they wanted it, what they would do with it, who would use it and who would not use it. Again, it feels as if it is more than a three-word slogan: not enough time was taken to explain this, and the result was entirely predictable.

According to a survey done by Which?, 55% of people had heard of the scheme and, of those who had, 71% felt that the NHS had not publicised the scheme well. Of those unaware of the scheme, nearly 40% stated that they would now be likely to opt out of it. Fifty per cent. of the respondents who were aware of the plans said that they had heard about them through news or social media rather than official sources. Forty-two per cent. said that hearing about the scheme made them trust the NHS less—that was a particularly startling finding. And nearly one third of those who knew of the scheme and had opted out of it had found the opt-out process overly complicated. What a mess. In the end, we saw 1.4 million people opt out, despite how hard it had been made to do so, and the plans were soon punted into the long grass, to return at a date not specified.

This is a real hammer blow for the confidence in how the state and the country handle data. These were the headlines on 13 and 14 October alone. The Bracknell News had, “Thousands of people in Bracknell Forest have opted out of sharing their medical records”. The Somerset County Gazette had, “MORE than 10,000 people in Somerset West and Taunton have opted out of sharing their medical records”. The Lancashire Evening Post had, “Thousands in Preston block bid to share medical records”. The Wirral Globe had, “Tens of thousands of people in Wirral have opted out of sharing their medical records”. The Bolton News had, “Nearly 20,000 Bolton patients opt out of sharing their medical records for research.” There were similar headlines in the Shields Gazette, Hemel Hempstead Gazette, the Hartlepool Mail and more. If it were not so serious, it would be funny.

--- Later in debate ---

[The Chair]

Alex Norris, gently or otherwise.

[Alex Norris]

I thank colleagues for their contributions, which I thought were really good. This is an important area, and it is important that we give it a proper look. The points that the hon. Member for Central Ayrshire made about the different types of data were important, and the run-through of their benefits and disbenefits was well made. I know that we will get to them again when we debate future amendments, so I will not prejudge that conversation. I still feel strongly—this relates to what the Minister said—that we have reached a point in the public conversation where there is no differentiation left, and that is the point that Simon Madden made. Because the temperature of the discussion has been elevated, they will be seen as one. That is what I have sought to address in my amendment.

My hon. Friend the Member for Bristol South was right to say that we have had a lost decade. That is, sad because it means that there have been healthcare improvements that we have not made. Over that time, extraordinary workforce gaps have emerged, and we would perhaps have been able better to plan around them if we had had a greater sense of the growing healthcare needs in our population. She is right that getting public trust back will be a “mammoth exercise”. That is why we have advocated for getting everything under one roof, in a single process.

The Minister mentioned that we all have a responsibility to explain data, and that it is important to make the arguments that we make in here out in our communities. I agree, but I feel I have much less of a responsibility to do that when the process is snuck out over the summer at short notice, without our ever having had a conversation about it. There could have been some effort to build consensus. I would have been willing to have difficult conversations with colleagues and constituents about it on that basis, but the way the process was handled made it impossible to defend. It left right hon. and hon. Members in the very strange circumstance of helping people to opt out of a system while thinking that that was not a good decision for them, or for anybody. As local representatives, we have a responsibility to people who ask for help.

I still do not get the sense from what has been said since then, publicly or in these proceedings, that the Government really understand the public message that they have sent, and I fear that that means we will keep repeating this conversation. In the amendment I simply ask that before the powers in the clause are turned on, a statement is made about how we seek to use these processes, and any other data processes, and handle them as one piece. That feels like a very modest ask.

I am going back and forth on whether to press the amendment to a Division. The Minister’s offer was a kind one, and I am conscious that I am putting a lot of this at his door. He did not create this process, but he is here speaking to part 2, so it is at least half him. Perhaps, when the dust has settled from what happened over the summer, we can have a conversation soon between Government and Opposition Members about how to do such things differently in future.

[Edward Argar]

I am happy to reassure the hon. Gentleman that either I or the relevant portfolio-holding Minister will happily have that conversation with him.

[Alex Norris]

I am grateful for that, and on that basis I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment made: 121, in clause 80, page 71, line 20, leave out “250(7)” and insert “251C(6A)”—(Edward Argar.)

This amendment is consequential on Amendment 120.

Question proposed, That the clause, as amended, stand part of the Bill.

[Edward Argar]

As we alluded to in our discussion on amendment 109, the clause inserts a new section into the Health and Social Care Act 2012. It has the sole objective of increasing the sharing of anonymous data for the benefit of the health and adult social care sector. The provision applies only to information that is in a form that does not identify any individual or enable the identity of any individual to be ascertained. It allows health and social care public bodies to require such information from other health and social care public bodies and from others who are commissioned by public bodies to provide health and adult social care services. As we discussed in relation to amendment 109, the provision requires those bodies to share only information that they already hold in anonymous form; they are not required to process information held in order to render it anonymous.

The use of “anonymised” in the title of the inserted chapter is a typographical error to be corrected. It does not reflect a change in the policy intention, nor does it have any practical impact on the clause. Anonymous information—information that does not identify any individual or enable the identity of any individual to be ascertained—can already be shared without the need for safeguards to ensure privacy and confidentiality. The provision will mean that public bodies will be able to require such information to be provided to them for the benefit of the health and adult social care sector.

The hon. Member for Nottingham North made an important point about understanding the message from the public on data. He may have a different interpretation, but I think the message was, “Data saves lives, but it is our data. We want to know and approve of how our data is used and have control over it.” People recognise that data can improve care and treatment, but it is their data and they want to be reassured and comfortable about how it is used and the safeguards that are in place, and that it is their choice rather than something that is done to them.

The new power to require sharing of anonymous information will complement section 251B of the Health and Social Care Act 2012, which places a duty on certain health or social care organisations to share information about an individual with certain persons where that will facilitate the provision of care to the individual and it is in the individual’s best interests. Both measures underline the importance of sharing data proportionately and appropriately to improve services and care.

The clause will also complement key provisions in the Bill, supporting those that strengthen the duty to co-operate across the health and care system. Regulations will provide for exceptions. Issues such as minimising the burden on providers and protecting commercially sensitive information may be taken into account when introducing exceptions. It is intended that proposed new section 251D(1), which allows for anonymous information to be required, will not be commenced until the regulations are made and the exceptions are clear. Given the extensive debate that we have had on amendment 109, I will stop there and commend the clause to the Committee.

Question put and agreed to.

Clause 80, as amended, ordered to stand part of the Bill.

Clause 81

General duties of the Health and Social Care Information Centre etc

Question proposed, That the clause stand part of the Bill.

--- Later in debate ---

NHS Digital will continue to be subject to data privacy laws in relation to its use of data; also, its legislative framework and processes place strict controls on its dissemination of data. Those controls include a requirement that any sharing of information be for legitimate purposes, such as those connected with the provision of health or adult social care, and scrutiny by NHS Digital’s independent group advising on the release of data, which advises NHS Digital on the appropriateness of sharing any confidential information. The clause will provide NHS Digital with the clarity it needs to use health and care data to benefit the public and support the health and care system safely and appropriately. I therefore commend it to the Committee.

[Alex Norris]

As the Minister says, the clause deals with the Health and Social Care Information Centre, known to its friends as NHS Digital. This is a crucial body, and everything we have heard in debate so far, and in part 1 of the Bill, makes NHS Digital’s role even more central. The provisions in the Bill are modest; to use the Minister’s preferred language, they are de minimis. NHS Digital will be crucial as the body that can bring together, under one roof, information held by various organisations, and that can make sense of multiple systems in order to get the right information out, which is difficult. As we have heard, the history is chequered.

I hope that when the Minister sums up, we will at least hear a commitment that goes beyond what is in the Bill, and that NHS Digital is empowered to get a grip on our data across the entire piece. This is very much in the spirit of what I just talked about; there are multiple processes, all of which will at some point go through NHS Digital, which makes it an important clearing house. I hope Ministers will have a keen eye on its resources, and technical expertise. There is a real need for the organisation to demonstrate leadership, politically and at official level, and to pull the system together. I hope that we will hear a little about that, and about the outlook for NHS Digital. I am grateful for the point about private companies’ data; I will not reiterate that.

[Edward Argar]

I am grateful to the shadow Minister for his remarks and their tone. I hope that I can reassure him, in the few brief moments that I will take to sum up, that we recognise entirely NHS Digital’s current and potential role in helping to pull the piece together, adopting an holistic approach to data, and making sure that there is a coherent data strategy that works. I am confident and reassured that it has the technical expertise and resources to continue to develop its work and deliver for people in this country. I also reassure him that it continues to be a key priority of Ministers and the Secretary of State to ensure that NHS Digital has the tools it needs to do the job, so that, to go back to the thread that has run through our debate this morning, it uses its data to save more lives and provide more treatment, and does so in a way brings the public and our electors along with it. I hope that reassures him, and I am grateful for his remarks.

Question put and agreed to.

Clause 81 ordered to stand part of the Bill.

Clause 82

Collection of information from private health care providers

Question proposed, That the clause stand part of the Bill.

--- Later in debate ---

[Alex Norris]

We think that this measure is particularly important. Private companies must play their role in the process and share their information, just as we would expect the NHS and local authority bodies to do. However, we want clarity that there will be no refuge to be had from hiding behind bogus confidentiality on commercial grounds. That is not explicitly recognised in the Bill, but I am hoping that I have read this right and the Minister can confirm that that is because proposed new section 251ZA, which clause 79(3) will insert into to the 2012 Act, allows the Secretary of State to compel the provision of that information if they judge it to be necessary.

[Edward Argar]

That is my understanding. If I have misunderstood, I will, of course, correct the record for the shadow Minister.

Question put and agreed to.

Clause 82 ordered to stand part of the Bill.

Clause 83

Collection of information about adult social care

[Alex Norris]

I beg to move amendment 143, in clause 83, page 73, line 23, after “assistance” insert

“or any form of reablement and rehabilitation provided under section 2 of the Care Act 2014 to reduce the need for care and support”.

This amendment is consequential on NC47.

[The Chair]

With this it will be convenient to discuss new clause 47—Registration of tertiary prevention activities in respect of provision of social care—

“(1) Section 9 of the Health and Social Care Act 2008 is amended in accordance with subsection (2).

(2) In subsection (3), at end insert ‘or any form of reablement and rehabilitation provided under section 2 of the Care Act 2014 to reduce the need for care and support’.”

This new clause would bring reablement and rehabilitation provided under section 2 of the Care Act 2014 to reduce the need for care and support into the purview of the Care Quality Commission.

[Alex Norris]

These measures would bring reablement and rehabilitation provided under section 2 of the Care Act 2014, for the purpose of reducing the need for care and support, into the purview of the Care Quality Commission. Unlike other adult social care functions, rehabilitation and reablement services are not currently part of regulated adult social care activities. There is no reporting, guidance on service standards, monitoring or inspection. That is despite the fact that rehab activities carry a level of risk similar to that of other adult social care interventions. This is particularly pertinent because rehabilitation services will be critical for those who are recovering from long covid.

One example that would fit into this category is vision rehabilitation. There is evidence from the Royal National Institute of Blind People that there are individuals who have been waiting since 2018 for their vision rehab. That will, of course, have been affected by the pandemic. However, those waiting more than two years, who have had this very profound change in their lives, need to develop new skills that they previously would have relied on their sight to achieve. The sooner that can be done, the better, because there are going to be so many other obstacles to adapt to.

The pandemic alone is not reason enough to offer comfort there. In the RNIB’s research, an inquiry made to lead councillors for adult social care in England last year found that about four in 10 did not know that vision rehabilitation formed part of that portfolio. An element of that will be because it is an unregulated function. Having been such a portfolio holder, I remember that you are very conscious of regulated provision in your area, because of the seriousness that comes with that, and I want to explore this gap a little.

Of course, the past 18 months have been extraordinary circumstances. Being a regulated activity on the same level of other adult social care activities would not fix the problems on its own, but it would have made a difference. It would certainly have given those gaps greater prominence. That might have been the beginning of addressing them. Indeed, there is a sense in the sector that this level of regulation would improve the visibility and priority of these services to senior managers and lead members by allowing for better data collection, for guidance, for quality standards to be developed by the National Institute for Health and Care Excellence, and for inspection services by the Care Quality Commission.

I will not say much more on that. It may well be that this is not the best mechanism to do those things, but I would be keen to understand why this particular element of adult social care is unregulated when so much effort is put into regulating other elements of it. Rehabilitation and reablement are particularly important.

[Edward Argar]

I am grateful to the shadow Minster for tabling the amendment and enabling us to have this discussion and air this issue. I understand his intentions in the amendment and new clause 47. It is right that social care services are appropriately and effectively regulated, and this includes rehabilitation and reablement. However, I do not believe that the amendment and the new clause are the right way of achieving the intended outcome.

Where providers carry out regulated activities as defined under schedule 1 to the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014, rehabilitation and reablement services are already within the scope of the CQC’s activities. As such, most rehabilitation and reablement services are CQC registered and are usually carrying on the regulated activities of accommodation, personal care, and treatment of disease, disorder or injury.

The definition of social care in section 9 of the 2008 Act is already sufficiently broad to cover reablement and rehabilitation provided under section 2 of the Care Act 2014. If there are concerns about the scope of CQC regulatory activities in relation to these services, they would perhaps be more appropriately picked up as part of the ongoing review of the 2014 Regulations. That work would probably sit better there. We intend to publish the response to that public consultation on the review in due course. For that reason, I would encourage the hon. Gentleman to withdraw the amendment and perhaps seek to use that process and that review as the mechanism by which to further air these issues.

[Alex Norris]

I am grateful for that reassurance. That does provide comfort, certainly on the CQC aspect. The driver behind the amendment was as much that the CQC sharpens its focus for local authorities. I am not quite sure that we have got to the point where this will close that gap. However, there is a good mechanism by which to do so, so I might pursue this later, rather than pushing it to a Division.

Amendment, by leave, withdrawn.

Question proposed, That the clause stand part of the Bill.

[Edward Argar]

This clause inserts a new chapter 3 into the Health and Social Care Act 2012, relating to information about adult social care. It introduces a new power for the Secretary of State to require regulated adult social care providers to provide information relating to themselves, their activities or individuals they have provided care to. The information may be sought only for purposes connected with the health or adult social care system in England, and its processing will need to comply with the UK general data protection regulation. Disclosure of commercially sensitive information is restricted under new section 277B(2).

As the shadow Minister set out, the clause enables the Secretary of State to delegate this function to the Health and Social Care Information Centre—known to its friends as NHS Digital—or to a special health authority, or to arrange for other persons to exercise them. Any such person would be subject to the restrictions on onward disclosure set out in new section 277B in the same way as the Secretary of State.

The clause is crucial for helping us to fill data gaps, understand more about self-funders and better manage emergency situations. Data from local authorities can show only part of the picture, as individuals who privately fund care have little or no contact with a local authority. That needs to be addressed to support local authorities to manage provider markets and secure improved outcomes for all receiving care and support.

The provisions will support a consistent and transparent approach to the processing of data across privately and publicly funded care to enable improved safety and quality of provision. Without that data, our ability to effectively identify and manage emerging risks and issues and to take appropriate action will be restricted.

The clause will enable us to collect higher-quality and more timely information, fill data gaps, support high-quality provision of services, and manage risks at local, regional and national levels. I therefore commend it to the Committee.

[Alex Norris]

To date we have discussed 83 clauses, and we might finally have found a little note of integration. Local authorities not only want to share their data, but they want a greater sense of the data that they do not have, as the Minister said. They are desperate to do this. They want the all the needs of their service users to be met, but they are frustrated by a system that is atomised and hard to navigate. We know that that is also exhausting for patients and their families. I know that local authorities will jump at the chance to use the provisions effectively, but I have a couple of questions.

First, is there an expectation and obligation that the data sharing will be a two-way street? There are times when local authorities are frustrated about their ability to get information either out from the centre or from local health services. I would not want that opportunity to be missed. Secondly, to reiterate a point I made earlier, it is a pain getting systems to talk to each other. Will the Minister and his officials look at what support and time may be needed to implement the measures?

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[Edward Argar]

The clause inserts a new chapter into the Health and Social Care Act 2012 dealing with the enforcement of information provisions. It enables regulations to be made to impose financial penalties on private providers that, without reasonable excuse, fail to comply with an information standard or a requirement to provide information, or that provide false or misleading information. I am sure that you, Mr Bone, and members of the Committee will be pleased to hear that the regulations will be subject to the affirmative procedure in Parliament. This allows us to provide for enforcement in respect of private organisations, which are not subject to usual accountability mechanisms and judicial review in the same way as public bodies. The clause also provides for the regulations to set out details such as the amount of the penalty, as well as safeguards such as notice of the penalty and an opportunity for the person to make representations and to appeal to the first tier tribunal. 

Clause 84 enables the Secretary of State to direct a special health authority to exercise the enforcement functions under regulations made under these new provisions and to give directions to the special health authority about the exercise of those functions. That provision and the related information provisions in the Bill are part of the wider strategy for health and care data, which aims to ensure more effective use of data across health and adult social care to deliver better treatment for patients, better health results for people who need care and support, and better decision making, research and support for those on the frontline. Our expectation is that those aims will be delivered through the commitments in that data strategy, including the legislative changes that we are making. The use of fines or, in the case of public bodies, judicial review is—as always—a mechanism of last resort but an important part of achieving those aims. I therefore commend the clause to the Committee.

[Alex Norris]

The clause is an important counterpart to clause 82. If private organisations do not comply with their duties, enforcement will be necessary, although we hope it will not prove to be so very often.

As the Minister said, much of this has been left to regulations, so we are flying a little blind, but his point about the affirmative procedure is welcome as we will have a chance to revisit the issue. Ahead of that, however, we suggest that the Government consider two things in formulating regulations. First, a private company should not be able to pay its way out of its responsibilities. The fine alone should not discharge the notice, and instead the information should still be forthcoming.

Secondly, in pursuit of that, under section 54 of the Modern Slavery Act 2015 the Secretary of State has the power to injunct a company and stop it trading if it does not comply with its responsibilities to publish a statement on modern slavery and its supply chain. A similar provision in the Bill would be highly effective. I hope that the Minister and his officials will consider that when they formulate the regulations. We will have a further debate on this at that juncture.

[Edward Argar]

I am happy to bear in mind those sensible points as we look to the formulation of regulations. I am grateful to the shadow Minister.

Question put and agreed to.

Clause 84 ordered to stand part of the Bill.

Clause 85

Medicine information systems

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[Alex Norris]

I congratulate the hon. Member for Central Ayrshire on her amendments and the case she made for them. I remember with fondness that during proceedings on the Medicines and Medical Devices Act 2021 we were able to offer constructive ways in which information regarding medical devices could be collected and used. We managed to move the Government on that. I hope we have similar success on these proposals too, because those were arguments well made.

Amendments 65 and 66 get to the heart of building confidence regarding data among the general public. There is widespread understanding about anonymised data and about datasets so big that individuals cannot be recognised, but we know that sometimes, if we want more detail, and particularly around rarer conditions or in rural and more isolated communities, we risk identification. Giving our information leaders the tools with which to protect individuals while still delivering the desired outcome is a sound principle and is part of hearing the message that was sent from our constituents, so we can start to rebuild trust. Providing such extra tools would be proportionate.

Turning to amendment 64, devolution is at its best when the four nations can exercise the advantage of local knowledge and leadership but collectively harness separate oversight to tackle collective challenges. That is important, particularly for the use of data. I strongly believe it will be in the interests of people across the United Kingdom for all four nations to have similar systems of standards and alignment on data. I am conscious that the challenges in north Nottingham will be similar to the challenges in north Cardiff, but devolution may well mean that services in Cardiff are different from those in Nottingham; that is part of the process. It can also mean that the outcomes are different, and we may want to know that, so that one community can, if it wants to, change to replicate what another is doing. I am not arguing against common usage; I think it is important, but we do not want a situation where the Secretary of State seeks to act with overbearing control as a first among equals. The mutual benefits of sharing data are so clear to all parties that they ought to be able to be agreed on a good-faith and negotiated basis. It should not need compulsion from the Secretary of State; in fact, that would be a significant failure. Therefore, the opt-out specified would be proportionate in this case.

Amendments 61 and 62 are crucial. The general practice data for planning and research process fell over because a significant part of the population did not trust the Government to handle their data appropriately. There is widespread concern about the Government’s relationship with big commercial entities, whether in the planning process, political donations or covid contracts. They are not scare stories or political fluff; they are real issues, they are in the public consciousness, and there is a sense that that relationship and the balance with the commercial sector is not one where the calibration is right.

On data, we must at every opportunity send the loudest possible signal that there are irremovable firewalls between people’s data and commercial usage. That works on two levels. First, as mentioned there is a lack of trust that the data will not be handed over to big commercial companies. We know that the mega-giants in social media have an insatiable desire for our data, and the old adage that social media is only free because our data is the product rings true. The NHS is not like a social media platform, though; it is free at the point of use, but we have paid for it through our taxes. It is not a free service we get in return for sharing our data, and there is no mandate to simply pass on the information collected as a result of our healthcare.

Let us be honest: what confidence would we have in sending the Government to negotiate with these companies? We have seen the painstaking process involved in just getting them to pay tax in this country; I would not, with full confidence, send a Prime Minister to negotiate a fee for our data, because I suspect we would end up paying the companies. This is an opportunity to be absolutely, immovably and irreversibly clear that we do not think that they should be near this data.

Secondly, it is worth reiterating that it is not as simple as just not handing data over. Even through legitimate and beneficial use of data, we are still at risk of getting a bad deal. For example, we no doubt want to use population-level healthcare to work out what conditions we may need new treatments for in the future. For that reason, we want researchers to use this data, and from that new treatments and drugs will emerge. Big pharmaceutical companies stand to gain from this, so how is it to be accounted for? We have a stake and have played a part in that process, so we ought to have a share of the benefits. How will the premium that we pay for the new treatments reflect the contribution that we have made—bluntly, where is our dividend? Those are the reasons that the GPDPR process fell apart, and why there is so much suspicion about the Government’s handling of data more generally. If we keep repeating the same approaches we will get the same outcomes. This is a moment to change that and to send a signal that our data will be protected from commercial interests; I hope the Minister will meet this moment.

Finally, on amendments 60 to 63 and 67, I will not rehearse the arguments I have previously made. I can conceive of times when NHS bodies, local authorities, community and voluntary sector providers or private sector providers might fall short of the expectations we have of them on data sharing, and exceptions where the Secretary of State may need to step in. That is why the Opposition have supported earlier clauses in part 2. That is a reasonable and proportionate way of ensuring that the data sharing regime is an enabling regime. I cannot think that applies to the devolved nations. All four nations are partners in the common pursuit of improving health outcomes; we may diverge in approach, but the common goal is the same. I cannot conceive that there will be such a divergence on data that it would be legitimate and wise to resolve it by working without shared consent. I hope, in the light of the arguments made, that the Minister will revisit that point.

[Edward Argar]

To the point made by the hon. Member for Central Ayrshire about the relationship with Edinburgh, while it is correct that a number of these clauses, and a large part of the Bill, were not finalised in their drafting until a day or two before publication, it is important to say that since the beginning of this year Scottish Government officials have had sight of the intentions and have been discussing with UK Government officials the wording and content of these clauses. I appreciate that this is not necessarily the same as a Minister seeing the exact wording, but that relationship and transparency has been there at that level.

I also put on record my gratitude to Humza Yousaf, the Cabinet Secretary for Health and Social Care. I spoke to him a week or two ago, and with tragic timing, in that conversation he asked me to pass on his best wishes to James Brokenshire for his recovery. I know that they got on well, and I hope that I have a similar relationship with Humza, who is pragmatic, and I appreciate the work that he is doing on this. We continue to talk, because I am keen that we have that healthy relationship and it is my intention that we respect the Sewel convention and work together to come to an agreed position. It is challenging because there are genuine differences of principle on how things should be interpreted, but I am committed to working with him, as he is with me, to find a way to reach a common position that respects everyone’s principles and approach.

The medicine information systems clauses give us an important opportunity to ensure we have the highest quality evidence on which to base critical regulatory decisions. If we get this right, there is real potential, which has been alluded to by all Members, to take a step forward in the way medicines are monitored, risks are identified and action is taken to protect patients. We need to provide for the most effective operation of this system to realise the full benefits for patients across the UK.

The detailed operation of the system will need to be carefully considered further as we develop the regulations under the clause. It will probably be important that the systems are able to receive information that is fully identifiable to ensure accurate linkage and deduplication of data. That is necessary to ensure that the information system is able to capture a comprehensive picture of a patient’s treatment to generate robust evidence, and that if a patient moves from one area of the UK to another, they are not lost from the registry.

Robust decision making on patient safety must be made using accurate data, which can only be achieved by processing identifiable data from the four nations to create the UK-wide information system. That necessitates precise data linkage due to the nature and potential rarity of harmful events based on multiple identifiable data points. It is proportionate to use identifiable data to understand potentially adverse patterns early.

Patient-identifiable information is also necessary where inclusion in a registry is to be used as a risk minimisation tool, where a patient needs to be identifiable in the registry to their healthcare providers, or if information systems are linked with wider safety monitoring mechanisms already in place, such as the yellow card scheme, through which the public and healthcare professionals can report adverse incidents experienced with a medicine to MHRA, to further strengthen the data it collates.

It is not necessary to make provision in the Bill, because the powers in clause 85 give the ability to follow the most appropriate approach on the collection and disclosure of data, following discussion with stakeholders on the detail of the future regulations. The confidentiality and security of patient data and the reassurance that offers to patients is paramount. I hope I can assure the hon. Member for Central Ayrshire and other Members that all data held in a medicines information system will be processed in compliance with data protection legislation, which places crucial safeguards on the use of that information. That includes data principles such as lawfulness, fairness and transparency, purpose limitation and data minimisation—meaning that the minimum necessary information will be collected to meet the required purpose.

I recognise the importance of ensuring the appropriate and proportionate use and access to information in a medicine information system. As part of our consultation on the regulations to establish and operate a medicine information system, we will engage with patient groups and other stakeholders across the UK, as well as the devolved Administrations, on the content and scope of the system to ensure we do what is right for patients.

On amendment 64, at official level we have been in discussions with the devolved Administrations since February about the provisions in the Bill, particularly those for which at an early stage we identified a shared agreement that legislative consent was required. Clause 85 is one of those. I would like to put on record my gratitude to those officials—we often talk at ministerial level, but they worked very hard for some time in the spirit of finding a way forward that works for everyone. Let me say the same in respect of the devolved Administrations, who have spent considerable time working with us.

Without going into too many details, because those discussions are continuing, I have had constructive discussions with the Cabinet Secretary for Health and Social Care in Edinburgh. I am keen, as he is, to do what we can to move those discussions forward. I hope we will be able to provide further reassurance over any outstanding areas of concern to the DAs, and where necessary and agreed, to table amendments ahead of Report. I hope that gives the hon. Lady some reassurance that I am directly engaged with the Cabinet Secretary and I will continue to be so. I am due to have another conversation with him in the coming days, and I have in my bundle another draft letter I am due to send him addressing some of the details of the granular points we are now looking at. I hope we will be able to make progress.

For medicine information systems to be truly effective as a tool, they need to cover all patients using the medicine across the UK. The regulatory decisions taken on the basis of the data collected will apply to the licensing of that medicine across the whole of the UK. My concern about Scottish Ministers choosing whether Scottish providers should or should not participate in the information system is that it could risk a fragmented approach, which is why we are having those discussions at policy level.

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[Edward Argar]

As we have discussed in the context of the various amendments, clause 85 inserts a new chapter, 1A, into the Medicines and Medical Devices Act 2021. It introduces a new power to make regulations that would provide for one or more medicines information systems to be established and operated by NHS Digital. The power may be exercised only for the specified purposes set out in the provision: namely, purposes relating to the safety, quality and efficacy of human medicines and the improvement of clinical decision making in relation to human medicines. The clause sets out the types of provisions that could be made by the regulations and, to ensure full engagement, includes a mandatory public consultation requirement that must be fulfilled before any regulations are made.

Medicines information systems will enhance the capture and collation of information on the uses and effects of specific medicines across all four nations, including medicines prescribed to patients by the NHS and private healthcare providers. That information will be used by the Medicines and Healthcare Products Regulatory Agency to enhance post-market surveillance of medicines by enabling the development of comprehensive UK-wide medicines registries, which will be used to drive improvements to patient safety. The evidence generated through medicines registries can be used to inform regulatory decision making, support local clinical practice and provide prescribers with the evidence needed to make better-informed decisions. For example, where safety concerns have led to the introduction of measures to minimise risk to patients, comprehensive medicines registries will enable early identification and investigation of cases where those measures are not being followed, so that additional action can be taken to improve safety at national, local or individual patient level.

The clause also ensures that we have the right powers to promptly modify what data is collected by NHS Digital as the need for new or different information about a medicine emerges in the light of changing or developing public health needs. That will provide the ability to rapidly respond to emerging risks to patient safety if and when they develop.

Given the overarching aims of the clause, it makes sense that the provisions will ultimately sit within the Medicines and Medical Devices Act 2021, which has a similar power for establishing information systems for medical devices in section 19. To ensure the effective operation of both the medicines information systems and the medical devices information systems, the clause also introduces necessary technical amendments to the MMD Act.

The clause drives forward improvements to the safety measures that protect patients in the UK against avoidable harm from medicines, and supports the need for the establishment of registries as recommended in the independent medicines and medical devices safety review, published last year. The clause directly supports putting patient safety at the heart of regulatory decision making. It will ensure that we have robust and comprehensive evidence to address public health concerns, and enable mechanisms to track the use and effects of medicines, based on public health needs. I therefore commend the clause to the Committee.

[Alex Norris]

I had intended to go the entire period that I am in this place, however long that might be, at least trying to be a young Member, if not a new Member, but clause 85 amends a piece of legislation that I was on the Bill Committee for previously, so I feel that I cannot do that now. That is really startling. Nevertheless, as I said earlier, I and the hon. Member for Central Ayrshire argued strongly for this in Committee on that Bill, and I certainly would want to see this used properly and developed. With all the daily treatments that there are—and certainly when it comes to the medical devices that are inserted into people on any given day and on every day of the year every year—we really ought to know what those things are and, when there is a problem, be able to deal with it quite quickly.

I will make one final point. The Minister references, quite rightly, the independent review—the Cumberlege review. We will be revisiting the matter in the new clauses, because the Government have not done the job properly on that review. Although there are elements in this clause that make good on some of the commitments, there are very significant things that have been left out and that the Government do not intend to do, and they have really let down the families by not doing them, so we will be returning to that point, and I hope to find the Government in listening mode when we do.

[Edward Argar]

I have nothing further to add to what we have said, save that I am always in listening mode when the shadow Minister is making his points.

Question put and agreed to.

Clause 85 accordingly ordered to stand part of the Bill.

Ordered, That further consideration be now adjourned. —(Steve Double.)