Clause 80 - Sharing anonymous health and social care information

Health and Care Bill – in a Public Bill Committee at 9:25 am on 19 October 2021.

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Photo of Alex Norris Alex Norris Shadow Minister (Health and Social Care) 9:25, 19 October 2021

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.

Each of those headlines is another setback for confidence in individuals’ data and its handling by the state. They go into people’s inboxes or browsers across all those communities and undermine the case for the better use of data. This episode should be looked on with real sadness and frustration. After significant opposition from Labour Members, the British Medical Association, the Royal College of General Practitioners, patients and campaigners, the process is now in mothballs, perhaps never to be seen again.

I talked to a journalist after the pause was announced, and they said to me, “Alex, that was a big win for you guys, eh?” I think they were surprised when I said that, at best, it was a pyrrhic victory, but in reality it was a loss for everybody because we will not now be in a position to use our data to its maximum effect. Even worse, the Government had tried the exact same thing eight years previously and failed in precisely the same way. As I say, they have had other failures to launch over the last decade. This is not a three-word slogan. It is just too complicated to be executed properly.

These things do not have to be made as hard as they look. I strongly believe that people will support the use of data to improve our health, but they want to know that it will not be flogged off to a political donor for goodness’ knows what purpose, and that it will not be given to a company for nothing to help it develop treatments that then get sold back to us at a significant premium. I do not think the tests proposed are too much to ask. There is so much suspicion these days about the use of data. Conspiracy theories abound, and the loss of confidence will set us back for a significant period. That is why I find it so hard to understand why we are not taking the opportunity in part 2 to rectify the mistakes over the summer and the previous decade, but amendment 109 seeks to help.

The Committee took evidence about this matter from NHSX at the beginning of our second sitting, which already seems a long time ago, and Simon Madden, the director of data policy, stated:

“Above all else, I think that the overriding need for trust and transparency—to build public trust in the use of health data—is vitally important”.

That is bang on the nose. I did not hear the Minister say that in his opening speech, so I hope we will when he responds. There needs to be an understanding that the failure to handle GPDPR properly has really set us back.

What I could not understand, though, was the witness’s next answer, when I asked about the process enabled by part 2 of the Bill and the future resumption of GPDPR, or presumably a successor programme, and whether they would run together. I felt the two answers were contradictory. The witness stated:

“Essentially, they are separate in terms of process”.

He then said:

“The general public will not make a distinction between any things to do with their health data.”––[Official Report, Health and Care Public Bill Committee, 7 September 2021; c. 37, Q46-7]

I would argue strongly that it is the second statement that is correct. Anything to do with data in part 2 of the Bill or a resumption of GPDPR, or a successor to GPDPR, will be considered the same thing by the public. It will be regarded with suspicion because of the mistakes that have been made. Amendment 109 seeks to pull the processes together into one place because, as the witness said, the public will think of them as one thing, and we ought to treat them as one thing.

Clause 80 enables a health or social care body to extract relevant data from another such body. I have no problem with that in an integrated system, but it cannot be decoupled from future attempts to create a single health and care information database, as the Government sought to do over the summer. I hope the Minister will say that the process in part 2 of the Bill and other processes that may return in future are two parts of the same whole and as such will be treated that way, or we will make the same errors. I desperately hope that we will hear that today. As I have said, clause 80 is important. Amendment 109 makes it better. I hope to at least hear from the Minister a desire to bring all data programmes under one roof. In principle, we need organisations to talk to each other, and there is a requirement for that to happen.

During party conference, I escaped briefly to meet people at the Macmillan Horizon Centre in Brighton, which supports people and their families living with cancer. I met a man called Marc Valentine who is living with cancer. Due to delays with his care, his cancer is now terminal. He visits multiple hospitals and care settings for guidance and treatment but, in an example of massive system failure, his records do not follow him from meeting to meeting. Here we have a person with cancer who had sat down with a world-class cancer clinician who said she could not offer guidance because she simply did not know anything about his case. As a system, we have wasted the one thing that Marc does not have—time. We can do much better.

The clause will help by allowing organisations to demand such information of each other. That is probably second-best; it would be better for information to be readily shareable. That is why Labour are proposing this amendment. We have heard that the public will not differentiate between the different processes, and I cannot quite understand why the Government propose to make them.

Photo of Philippa Whitford Philippa Whitford Shadow SNP Spokesperson (Health and Social Care), Shadow SNP Spokesperson (Europe) 9:45, 19 October 2021

It is important that we recognise the different types of data. The clause is talking about anonymised data, from which we are looking at performance standards, outcome standards and the percentage of patients who had a certain treatment. It is not talking specifically about identifiable data. We also have fully identifiable data with patient details, and in between those we have what is called pseudonymised data, which is like a blurry picture. However, the public are also concerned about that data because they fear that when it is triangulated with other sources somebody can be identified.

It is important that clinical data—the basis of communication between a GP, a breast surgeon like me and an oncologist in a centre—moves around and can be used. However, we must recognise that, as the hon. Member for Nottingham North clarified with the survey that he quoted, the public are concerned about their data. Beyond someone’s biological self, the most important thing that relates to them is their personal data, and after the scandal of seven years ago and Google DeepMind, the public do not trust programmes that suddenly appear with little discussion and consultation and that talk about taking data. There is a huge public education process to be carried out, but equally, in the end, confidence is undermined by the talk about sharing data, whether identifiable or pseudonymised, with commercial companies.

Anonymised data is not an issue. For example, of the patients who took a drug, 10% got a side effect and, of those, 3% had previous heart disease. That is useful information; it does not identify patients. The public’s concern is that commercial companies, including pharmaceutical companies, could access pseudonymised or full data that would identify them. It is important that the Government explain the three types of data and how they are used for utterly different things. The public have no issue with Public Health England or academics working to recognise what is happening with heart disease or cancer in the UK and learning from data. However, they are concerned about the potential commercial use and potential revelation of their personal data.

The Government have a long job to do to convince the public. The danger is that the baby goes out with the bathwater and we lose not just research but integrated functioning in NHS England. It is important to recognise that the data held in the devolved health services is completely separate. I will come to that on clause 85.

Photo of Karin Smyth Karin Smyth Labour, Bristol South

Unfortunately, Mr Bone, you missed our last sitting, in which I relayed to other Members my long career in the NHS and my experience on these matters, but I will start in the spirit in which I left off. Having worked at a clinical commissioning group at the time of the episode, I absolutely concur with the comments made by the Labour and SNP Front Benchers, my hon. Friend the Member for Nottingham North and the hon. Member for Central Ayrshire.

We have had a lost decade, which is a great shame because the use of such data—we have learned much more about data and science during the pandemic—can save lives. My hon. Friend the Member for Nottingham North mentioned meeting a patient who could perhaps have been helped better. At the end of the day, that is what we want to make happen.

My experience inside the health service will not be everybody’s, but on information governance the attitude to data is very well developed and sophisticated, and people take it incredibly seriously. When we started on the episode, the value of that really seemed self-evident in the system.

We need to bear in mind, as we look at the issue as legislators, that the people who deal with it day to day to effect what they see as positive change may be operating on one track and be completely taken by surprise by the public reaction. I remember trying to understand it myself; I am not a data specialist, but I tried to understand the different channels of what was being tried at the time. I explained to more senior managers that it did not sit right with me—I did not understand where it was going or what it meant for me. If I did not understand it, I knew that if it were not explained carefully, as the hon. Member for Central Ayrshire says, the general public would not either.

There is a missed opportunity. I ask the Minister to consider our very helpful Opposition amendment, not just in his role as a political leader in the Government, but by thinking about the rest of the system and how we can support it to do what it needs to. We absolutely need to bring the general public with us. Because of the mistakes of the past, I would argue that that we now require quite a mammoth exercise: not just differentiating between types of data, but considering who owns it, how we give it and what powers we will have in future.

As my hon. Friend the Member for Nottingham North said, the opt-out was really quite an incredible exercise over the summer. I think that has gone below the political radar in terms of the numbers of people who have taken that really quite difficult step. Part of this, as we will come to later, is about trust in GPs and GP data, which is where so much of our individual source data goes. The role of GPs also has to be brought very carefully along the path, because that data is of course very valuable for them.

The commercialisation concerns people, but beyond that, this is about our very essence—our trust in the system and the clinicians we see, who most of the time are our GPs. The Government need to step back—although not for too long, because they have already stepped back for a decade—and consider what is the best public exercise that they could embark on to resolve this problem, as the system and all of us really need.

Accepting our amendment in the spirit in which it was moved would be a step in the right direction. If the Government do not accept it, at the very least we should understand what they propose in its place.

Photo of Edward Argar Edward Argar Minister of State (Department of Health and Social Care)

I am grateful to the hon. Member for Nottingham North for tabling amendment 109. I appreciate where he is coming from; as I understand it, his amendment is intended to ensure that the clause does not require health and care organisations to provide information that they could already be required to provide under existing powers. He talked about consistency and a single approach, and he is right.

The hon. Member for Bristol South is absolutely right, as is the SNP spokesperson, the hon. Member for Central Ayrshire, about the need for us—the Government, the system and indeed all of us—to better explain and reassure people about the fact that data saves lives and about how it is used. The hon. Member for Central Ayrshire was right to draw a distinction between pseudonymised and anonymised data. She was equally right to highlight that pseudonymised data is not relevant under the power, which is about anonymised data. In a sense, the reassurance is there, but it is incumbent on us to make it clear to people.

We have seen in individuals’ treatment and care pathways the value of data shared and the benefits that it can bring, but we have also seen that more broadly in the development of new drugs and treatments and the benefits that can come from science and research. It is a challenge on occasion to draw a neat line, because some commercial entities develop drugs and do the research. The hon. Member for Bristol South made a key point. She will correct me if I have misunderstood, but people’s concern is not about anonymised data being used to develop drugs that will save lives; it is about where there is a commercial impetus behind it and a commercial gain, and whether the data could be used in a particular way.

In terms of safeguards to prevent private companies from requesting data and using it for commercial purposes, the power to require the anonymous information applies only to public bodies. All NHS organisations will be expected to meet very high standards around the transparency and accountability set out in our five principles governing data-sharing arrangements entered into by NHS organisations, published in July 2019. Those include the principle that any use of NHS data not in the public domain must have an explicit aim to improve the health, welfare and care of patients in the NHS, or how it operates, and relevant bodies would have to continue to comply with those standards.

The hon. Member for Nottingham North made a point about different strands and paths being applied to different things. In June 2021, the then Secretary of State published “Data saves lives: reshaping health and social care with data”, which is the overarching strategic approach. In reality, a lot of what is in that does not require legislation. We do not want to over-legislate, but we are seeking to fill some gaps.

On the hon. Gentleman’s underlying points, the clause his amendment seeks to tweak is designed to enable individual health and adult social care public bodies to access anonymous data to support their functions. It is clearly intended to establish that sharing anonymous data to help staff do their jobs is a key duty and responsibility of all organisations that provide health and social care services in England. It applies only to information that does not relate to identified or identifiable individuals. The information can already be shared without the need for further safeguards around privacy and confidentiality. The Bill does not provide an alternative route for sharing personal or patient information that would be subject to safeguards and data protection legislation, or make any other provisions applying to data-sharing programmes, such as the General Practice Data for Planning and Research programme.

The June strategy that I referred to includes a commitment to reduce the data burden for health and care staff. That is why the clause does not expressly require organisations to process information to render it anonymous so as to comply with a request. We have also taken regulation-making powers to enable exceptions to the power to be made. Again, we come back to seeking to provide appropriate safeguards, but minimising the burden.

The hon. Member for Nottingham North touched on regulations. Key to our consideration of what exceptions should be included in the regulations will be minimising that burden. That could include providing that the power does not apply to information available through other means, and we do not intend to commence the clause until the underpinning regulations are also in place.

On the hon. Gentleman’s amendment, I entirely understand where he is coming from, but I fear that it is not necessary for safeguarding patient information, given that the clause relates only to anonymised data and not to identified or identifiable individuals. I fear equally that it would not go with the grain of seeking to ensure that the burden of data sharing is minimised. In particular, it would appear—he may correct me on this—to require the Secretary of State to carry out a review before each request is made under the clause and to lay a report before Parliament.

I ask the hon. Gentleman not to press the amendment to a vote, although I suspect he will. I am happy to have further conversations with him about what he seeks to achieve. Hopefully, I can give him more reassurance or, if I cannot, explore whether there is more that we need to do in this space to reassure him, the Committee, the House and the broader public on the points about confidence made by the hon. Members for Bristol South and for Central Ayrshire. On that basis, I gently encourage him to consider not pressing his amendment to a Division, and I am happy to engage with him and the Committee if he feels that that would be constructive.

Photo of Alex Norris Alex Norris Shadow Minister (Health and Social Care)

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.

Photo of Edward Argar Edward Argar Minister of State (Department of Health and Social Care)

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

Photo of Alex Norris Alex Norris Shadow Minister (Health and Social Care)

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.

Photo of Edward Argar Edward Argar Minister of State (Department of Health and Social Care)

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.