Care Bill [HL]

Lord Patel Excerpts

Wednesday 7th May 2014 Lords Chamber

[Lord Hunt of Kings Heath]

My Lords, I will speak to my Amendment 45D, although I may speak to the other two amendments, in the names of the noble Lords, Lord Owen and Lord Turnberg, as well, because they are relevant to the whole debate.

There is no question that the NHS has a rich reservoir of patient information. If we can exploit it to the full, its use could enhance care, aid early diagnosis and be a rich source of data for the development of new medicines and treatments. There is no argument at all here between the Opposition and the Government on this. The noble Earl reminded me that I took through legislation in 2002 that set the foundations for what we are now debating. He will recall that I was then arguing for us to use the potential of NHS information to the full. The noble Earl then, supported memorably by the noble Baroness, Lady Cumberlege, was a mite worried, I recall, about patient confidentiality. I think, however, that we reached a broad consensus that this is information to be brought together and used, but alongside safeguards that have public confidence. This is simply the issue that is before us at the moment.

Under the extension of the scheme, the Health and Social Care Information Centre can require GPs to upload patient data in an identifiable form from every GP practice in England. This will be linked to the Hospital Episode Statistics and other data sets. The information centre is a body corporate that can require a health and social care body to provide information—including confidential information. That is all well and good. The problem is that the centre and NHS England have botched its implementation, so much so that the scheme had to be withdrawn, originally for six months until the autumn, but my understanding is that the chief executive of the NHS, in evidence to the Health Select Committee, said that that date no longer applied. Perhaps the noble Earl could, when he winds up, comment on that.

My own view is that this is a dead duck. The Government will not be in a position to enable the scheme to go ahead any time before the election because so much public confidence has been lost. This is not surprising. Clearly, the information centre and NHS England took an inadequate approach in their public communications effort and there was a lack of effectiveness and accountability. It is clear that there are concerns about whether such information can be kept confidential in practice, and there is a worry that pseudonymised data could, in certain circumstances, be manipulated to identify a particular patient. There have also been concerns, referred to by my noble friend, about inappropriate use for commercial reasons, such as by insurance companies. I make a big distinction here: I would want the pharmaceutical industry to be able to use that information in research and development. That is absolutely legitimate.

There is also concern about general practitioners and their approach. Before the decision was made to suspend the scheme, there were worrying signs that a number of GP practices would not co-operate or would advise their patients to opt out of the system. It is important to recognise that we will automatically be part of the system as patients unless we opt out. Again, I agree with that principle. It is the only way to operate it. However, I am not convinced about having to go to my GP, if I can get an appointment, which is quite arguable at the moment, and having to talk to my GP—or, even worse, the receptionist—to say that I want to opt out of the scheme. There are real concerns about this system. Unless the GP body as a whole is confident that it is going to run with this, it will be destroyed because so many people will be encouraged to opt out that it will not achieve what it is meant to achieve.

I agree with the Royal Statistical Society which argues that we need a robust response to restore public confidence. Of course, I welcome the changes that the Government have made as a result of debates in the other place and in your Lordships’ House. The question, however, is: do they go far enough to restore public confidence? In my view, they do not. The Government have to make the bold statement that the system cannot be allowed to run under the people who are running it at the moment. They have lost people’s confidence. I cannot put this across strongly enough to the Minister: if you talk to organisations that know about the subject, you find that they are clear that they now do not have confidence in the people who are running the system.

That is why the Motion of the noble Lord, Lord Owen, is so important. He is basically saying that we need an external body that is independent and can give total oversight to the scheme. I support my noble friend’s amendment as well. I agree that it would be better in primary legislation than secondary, but there is no harm in having some secondary legislation to back up what we may agree in your Lordships’ House today.

In the Commons, the Government introduced amendments regarding the use of the term “promotion of health” for the purposes of the dissemination of information. Of course, “the promotion of health” could be a very open-ended definition. There was some fear in the other place that commercial companies—say, food and drink companies—could argue that they needed information for a public health campaign. My Amendment 45D seeks to provide reassurance by asking for regulations to be laid that are explicit about the circumstances in which information concerning the promotion of health can be used.

In supporting my own amendment, I say again to the Minister that there is no disagreement whatever about the importance of care.data, about the need for it to be successful or about the huge benefit to our country if it becomes successful. Success, though, is not guaranteed, and at the moment I believe it is unlikely unless the Government make changes. I hope that the House and the Minister will be sympathetic to these amendments.

[Lord Patel (CB)]

My Lords, I will speak very briefly. I will not repeat everything that has been said but I support what was said by the noble Lord, Lord Turnberg, particularly about the use of data for biomedical and other medical research. I have been involved on several occasions with perinatal epidemiological research, and such data are vital for that. There is no doubt that we need to be certain that core data will be available for research purposes.

I had not thought that “the promotion of health” might be construed as applying to the food industry; I had interpreted the phrase to mean epidemiological and public health research. However, if the interpretation includes the promotion of health by the food industry, then of course I support it absolutely.

I would be content to have this in secondary legislation at this stage, as the noble Lord, Lord Hunt, mentioned. However, there is no doubt that the way in which the issue has been handled by Public Health England has lost confidence. It could have been handled better, and I hope that Public Health England has learnt lessons from it.

[Noble Lords]

NHS England.

[Lord Patel]

NHS England, not Public Health England. My apologies; sometimes I do not focus well, for reasons that are not obvious to your Lordships. I have some problems that occur. I mean NHS England. I wondered why the Minister was looking at me so curiously. I was about to check whether I was dressed correctly.

I understand that NHS England got this information to the public by doing a mail shot to every household. Some people received it but most people I have asked, among friends and family, do not seem to have done so. On top of that, the mail shot was not clear about what it was asking patients and the public to do. It was actually asking them to decide whether or not they wanted to opt out of their information being collected. That is the kind of process that has brought about a lack of confidence in how this has been progressed.