Health and Social Care (National Data Guardian) Bill

Chris Philp Excerpts

3rd reading: House of Commons & Report stage: House of Commons
Friday 6th July 2018 Commons Chamber

[Mr Peter Bone (Wellingborough) (Con)]

I beg to move, That the Bill be now read the Third time.

You will be pleased to learn, Mr Deputy Speaker, that with 266 days until we leave the European Union, I will not mention red lines or anything like that. But I congratulate my hon. Friend the Member for Lewes (Maria Caulfield) on navigating her Bill through this place. The Government have clearly been listening to her, because I understand that at Chequers today all the mobile phones have been confiscated.

It gives me great pleasure to promote this important Bill, and I am grateful for the cross-party support. I am keen to get through Third Reading as quickly as possible because there is another important Bill to follow, and hopefully there will be time for that debate.

The purpose of this Bill is to put on to a statutory footing the office of the National Data Guardian for Health and Social Care, and to promote the provision of advice and guidance on the processing of health and social care data in England. Many people have helped me in preparing the Bill, and I would like to thank some of them.

It would be wrong not to start with my hon. Friend the Member for Bury St Edmunds (Jo Churchill). She was one of the Bill’s original sponsors but, because she has been promoted into the Government, she can no longer speak on the Bill. It is due to her tenacity that the Bill is now being considered for the Third time. If she were able to say something, she might say something like this:

“The confidence that a statutory National Data Guardian brings, allows for more responsible and innovative uses of data to work towards cures for cancer and other conditions.

The Bill will empower the National Data Guardian to ensure that cancer researchers can take full advantage of the future possibilities of genomics and Artificial Intelligence, and whatever comes after genomics and AI, where every patient can have confidence that their data will be used in a way which is consensual, safe, and transparent.

For the vast majority of patients (98%) who are happy for their data to be used, it also helps them have confidence that not only can their data be used, but that it will be used, responsibly, for the purposes patients already expect.

It is important that this brief but important piece of legislation gives patients the confidence they need to engage with health data for not only their own care pathways but also giving them choice in sharing when they wish.”

I am grateful for all her efforts behind the scenes to get us to Third Reading.

I also thank the Secretary of State for Health and Social Care, who kindly wrote to me yesterday:

“Placing the National Data Guardian on a statutory footing is significant in increasing public trust in the appropriate and effective use of health and care data, in promoting challenge and building assurance across the health and care system, and enabling the system to access the data that it needs to run safely, effectively and efficiently.

I would like to once more confirm the Government’s commitment to the Bill.”

I am grateful to him for that letter.

The excellent Minister at the Dispatch Box, the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Thurrock (Jackie Doyle-Price), has been so helpful in the preparation of this Bill. She has put more work into this than she had to, and I really appreciate her help.

The National Data Guardian’s role is to help to make people safe and to give them confidence that their information is securely safeguarded. Dame Fiona Caldicott is the National Data Guardian. I do not know whether hon. Members have met her, but she is a formidable lady. There are Caldicott guardians in every hospital, and we are now putting her role on a statutory footing. Her help in preparing the Bill has been immense. I hope she will go on for many years but, when she does retire, there will be a new National Data Guardian—that will definitely happen.

The priority of the National Data Guardian is to build trust in the use of data across health and social care. The Data Guardian is guided by three main principles:

“encouraging clinicians and other members of care teams to share information to enable joined-up care, better diagnosis and treatment;

ensuring there are no surprises to the citizen about how their health and care data is being used and that they are given a choice about this; and

building a dialogue with the public about how we all wish information to be used, to include a range of voices including commercial companies providing drugs and services to the NHS, researchers discovering new connections that transform treatments, and those managing the services”.

I am also very grateful to Baroness Caroline Chisholm of Owlpen, who will be taking the Bill through the House of Lords, should it receive its Third Reading today. She will be known to many on the Conservative Benches, as we had to deal with her when she was head of candidates, so many of us here will appreciate her greatly. I also want to give particular thanks to the Labour Opposition and to the shadow Minister for all his support. I am in a difficult position, in that my Bill got its Second Reading after the Bill that would change the parliamentary constituencies. Every week at Prime Minister’s questions, the public think it is about party political point scoring and that we never work together. Of course that is not what happens; the vast majority of Bills that go through this House are improved by what the Opposition do, as is the case with my Bill. I particularly want to thank the Opposition for not blocking this Bill. I have to say that when the Speaker was in the Chair and this Bill, standing in my name, came up for its Second Reading, he paused for a very long time, expecting someone to object—presumably he thought it would be someone from our side. It would have been quite appropriate if the Labour Opposition had objected to my Bill if they had wanted to do so because it went ahead of their Bill, which had already got its Second Reading. I am therefore very grateful to the Opposition. I have chosen today for the Third Reading so that there are still opportunities for that Bill to proceed, if it is given its money resolution.

I do not want to take too much more time, because I understand the pressure we are under today, but I wish to mention a couple of things that were raised in Committee. I am grateful in particular to my hon. Friends the Members for Christchurch (Sir Christopher Chope) and for Shipley (Philip Davies), and the hon. Member for Rhondda (Chris Bryant) for their involvement in the Committee. I was brave to put those three on a Committee, but the hon. Member for Rhondda asked a particularly difficult question. The Minister answered it well, but, on reflection, I can now provide a bit more clarification. This Bill says that it extends to the territory of England and Wales, which it does, but it applies only to England. The logical question was, “Why on earth did it apply to England and Wales then?” In layman’s terms, the answer is simply that as a legal entity in Parliament England does not exist, and England and Wales are lumped together. We can have a Bill that extends to England and Wales; to England, Wales and Scotland; or to England, Wales, Scotland and Northern Ireland. That is the answer on this point, and this Bill applies only to England. On reflection, I recall that I am a fellow of the Institute of Chartered Accountants in England and Wales. I do not think I quite managed to get the answer across on that point in Committee.

[Chris Philp (Croydon South) (Con)]

Can my hon. Friend let the House know what the equivalent arrangements are, if any, in Wales and Scotland?

[Mr Bone]

The answer to that, of course, is that those places have devolution and it is up to them to make their decisions. Obviously, I believe that what we are doing in England is best practice and I am sure they will take note of it. At that point, I ought to conclude. I thank everyone for their help so far, and I hope we can make progress later on.

--- Later in debate ---

[Justin Madders]

The hon. Gentleman is absolutely right that there are many variations in conditions and, indeed, outcomes throughout the whole country. The importance of data in establishing patterns cannot be understated.

[Chris Philp]

The British Heart Foundation recently said of the research environment that “too much” of its researchers’ time

“is taken up with unnecessary red tape and bureaucracy. The weight of this form-filling is slowing down vital discoveries”.

Does the hon. Gentleman share my hope that putting this role on a statutory footing will help to address such concerns?

[Justin Madders]

Whenever we speak to anyone in the NHS, particularly GPs, they express concern about form filling, but it is important that due processes are followed and that there is a clear audit line. I am sure that the hon. Gentleman can have a word with the Minister about what practical steps can be taken to deal with some of the British Heart Foundation’s concerns.

We support the establishment of a statute-backed Data Guardian because it is one way to improve confidence in the way data is used. As I said in Committee, we are concerned that the Bill does not include an absolute obligation for data controllers to act on advice—only to have regard to it—and there appears to be no requirement for organisations to state proactively how they have dealt with such advice. Responses to question 5 of the Government’s consultation were overwhelmingly supportive of such a provision. In that question, the Government proposed that

“organisations holding health and care data which could be used to identify individuals should be required to publish all materials demonstrating how they have responded to advice from the National Data Guardian.”

In their response to the consultation, the Government said:

“Responses were supportive of the proposal that the national data guardian should be given formal advice giving powers.”

That would certainly provide reassurances that the National Data Guardian will have real authority and act as an independent voice for patients. Without statutory backing, it is foreseeable that the National Data Guardian’s authority and independence could be undermined. Without a requirement for organisations that receive advice to provide evidence of their response, it could be difficult to be sure that the National Data Guardian is effective in doing the important job required by the Bill.

I am sure that Members will recognise that the requirement for a body to have regard to advice does not always mean that the body acts on that advice. We know that how clinical commissioning groups interpret the guidance of the National Institute for Health and Care Excellence leads to some variations in the way in which treatments are dispensed and that advice does seem to be ignored with impunity by CCGs.

I know that the hon. Member for Wellingborough does not see the need for additional powers to be handed to the guardian and does not want to see effectively a regulator, which is the road that my proposals may be taking us down, but it is important that, when the Minister responds, she gives us some indication as to what yardstick she proposes will be used to ensure that the concerns that I have set out will be effectively judged by the guardian.

In conclusion, although I have set out some concerns, we are not intending to oppose the Bill as it is currently drafted today.

[Peter Heaton-Jones (North Devon) (Con)]

It is a pleasure to be called so early in this debate to speak on the Bill. I particularly wanted to do so to give it my fulsome support, but also because I had the pleasure—and it was a pleasure—to serve on the Bill Committee for the Data Protection Act 2018. We had 10 sittings over five days, and fascinating it was, too. What came out of that Committee was a much improved Bill, or Act as it now is. What my hon. Friend the Member for Wellingborough (Mr Bone) does with this very important Bill is to create a vital adjunct to that Act. This is designed to work hand in glove with the Data Protection Act and the two will work together, which is why I am delighted to be able to make a contribution here.

I want to echo what was said in congratulating not only my hon. Friend on this Bill, but the mother of the Bill in its previous form, my hon. Friend the Member for Bury St Edmunds (Jo Churchill), who, now that she is my Whip, I am bound to say is an extraordinarily wise Member of this House. If nothing else, this Bill should be known as one that she has helped in its genesis.

Apart from the procedural reasons that my hon. Friend the Member for Wellingborough cited for why we are bringing this Bill to the House today, there is also another reason why it is extraordinarily appropriate, which is that today is, of course, the 70th anniversary of the national health service. It is absolutely right that we take a moment to remember that and to thank all of those who work so hard in it. How appropriate it is that we hope to progress this Bill today on this auspicious anniversary, because it will have a very significant role to play in the future of our national health service.

The Bill seeks to ensure that particular care is taken in the health and social care system when it comes to the holding of private data. It is something about which, rightly, there is huge public concern. Here is why. That sort of data and the technology on which it relies will have a massive role to play in our healthcare system. Technology will revolutionise the way in which we provide health and social care services in our communities. I have to say, on a personal note, that it is of particular benefit to rural areas such as North Devon, where we have particular geographic challenges. Quite simply, many people have to make long journeys to physically access the sort of healthcare provision that they have a right to expect in the 21st century. What this sort of technology does—the Bill goes a long way to protect people’s data as part of that—is, in effect, to put a doctor in the palm of someone’s hand through smartphone technology. It is slightly odd that we have just had a debate about the evils of smartphones in one aspect of our social policy thinking, as now we are debating an area where smartphones are having a definite and precise benefit.

There is something more precise though, and that is artificial intelligence and the way it is used to improve healthcare provision. AI has the capacity to provide bespoke treatment for individuals who are suffering from cancer, for example. Scientists at the University of Stanford have done a remarkable trial that has shown that artificial intelligence is extraordinarily accurate in identifying skin cancer, for instance. We are reaching a point where it is no longer necessary for a doctor, nurse or medical professional physically to examine a patient: there is now artificial intelligence that is able to do that remotely. I understand from the research that has been done that it has a very high degree of accuracy in identifying skin cancer. This sort of technology could help to improve healthcare dramatically. Not only can artificial intelligence identify cancer, but developers are currently working on utilising it to help with treatment as well. It can assess factors such as the patient’s genetic history and lifestyle choices, for instance, to identify the most effective course of treatment. In fact, the Government intend to use AI to prevent more than 20,000 cancer-related deaths by 2023, but its long-term potential is much greater than that.

However—this is the crux of the matter—for these sorts of innovations to work and for us to be able to embrace this sort of technology securely and safely, and with peace of mind for the general public, a great deal of very personal information will need to be securely processed and stored while ensuring that it cannot be misused. That is what causes a great deal of concern among the public. If we want to ensure that individuals are going to take full advantage of these new technological breakthroughs that allow such improvements in healthcare, we have to be able to provide them with the absolute, copper-bottomed assurance that, when they provide the data that allows this sort of technology to intervene in their healthcare, they can be absolutely sure that they have confidence in the system of data storage, and confidence in the way in which their data will be processed, used and protected. We must achieve this through the instigation of a system that ensures the minimum possible data breaches, with robust guidance on good practice and established procedures to minimise damage. This Bill, working in partnership with the Data Protection Act, will go a long way towards achieving that.

The main purpose of the Bill is to establish the National Data Guardian for Health and Social Care to promote the provision of advice and guidance about the processing of data. Specifically, and really importantly, the Bill establishes the National Data Guardian as a statutory office holder. We have such an official at the moment, as my hon. Friend the Member for Wellingborough said, but the Bill puts the post on a statutory footing.

That is important for two reasons. First, it gives the public absolute confidence in the system, because there is no higher degree of official backing for what the National Data Guardian is and does than to have it on a statutory footing as passed by this place. Secondly, it maximises the post holder’s accountability to this place. I am pleased that there is provision not only for a regular review of the work of the National Data Guardian but a suggestion that she—at the moment, it is a she—should produce an annual report and is accountable for reporting that review to this House. That is why it is absolutely vital that those provisions are in the Bill, and I am extremely glad that they are.

[Chris Philp]

Does my hon. Friend hope that the Data Guardian will focus primarily on ensuring that data is being appropriately used? Does he share my hope that she will go further and seek to actively promote data sharing for use particularly in research applications?

[Peter Heaton-Jones]

I hope for both. It is really important that we do not rest on our laurels and simply say that the powers currently held by the guardian are sufficient. She must be given the right to look forward to ensure that in future, as technology changes and advances—as it inevitably will—she is able to encourage other stakeholders, lawfully and in a secure way, to ensure that the data that is provided by NHS patients is used by the many organisations that would need to share it in a secure and safe way.