Health and Care Bill (Thirteenth sitting)

Karin Smyth Excerpts

Committee stage
Tuesday 19th October 2021 Public Bill Committees

[Dr Philippa Whitford (Central Ayrshire) (SNP)]

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 care.data 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.

[Karin Smyth (Bristol South) (Lab)]

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 care.data 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 care.data 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.

[Edward Argar]

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.