UK Parliament / Open data

Care Bill [HL]

Proceeding contribution from Lord Patel (Crossbench) in the House of Lords on Wednesday, 7 May 2014. It occurred during Debate on bills on Care Bill [HL].

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.

5.45 pm

Listening to the noble Earl today, I am grateful to him for clarifying some of the issues. The key issue is public trust, and the trust of the professionals, that the confidentiality of the information will be maintained. To this end, I have been briefed by the Academy of Medical Royal Colleges, which has discussed this issue at length. It feels today that it will be supportive of the Government’s intentions in this legislation. The academy and individual medical royal colleges and faculties have all expressed their strong support for the principles of the care.data programme. However, they say that the public and medical professionals must have confidence that the system will provide the necessary privacy for individual patient information and sufficient protection against the misuse of data. The academy now wishes to see progress on the effective implementation of proposals that can secure public and professional confidence. The academy does not, therefore, want to see further unnecessary delay imposed on the project at this stage.

Equally, I support the view of the NHS England chief executive, Simon Stevens, which he presented to the Health Select Committee on 30 April, that there should not be an artificial timescale for the project and that issues of concern should be effectively addressed before the system is fully implemented. I support the current proposals for a phased roll-out and to trial, test, evaluate and refine the programme; and also for a clear explanation of the benefits to the patient.

The Academy of Medical Royal Colleges expressed some concern. The specific issue which I hope the noble Earl will address in his response is a clarification of what is meant by the “one strike and you’re out” provision in cases of inadvertent rather than deliberate error. On the definition of the resourcing of safe havens for storage and use of data that the noble Earl mentioned, he might like to comment on what he meant by the proposal to create a secure data lab for the handling of data that will maintain confidentiality; the exclusion of personal identifiers; the effective links to the patient records standards board programme to define the content of patient records; and the

straightforward mechanisms for personal opt-out that retain the fundamental principle of being an opt-out rather than an opt-in scheme. I hope that the noble Earl will be able to comment on some of these issues of concern.

There must be a sustained programme with the support of the medical profession and all other clinical professions. The public has great trust in clinical professions, but not in managers of health—and nor, dare I say it, in politicians. Assuming that the points above are addressed and the pilot projects are successful, I hope that we can then move on to how we can progress this further. In this respect, can the Minister make a commitment that no changes to the law will be made to provide for the access of commissioners to this kind of data without further consultation and parliamentary scrutiny? Can he also say something about how the data will be handled in a secure way?

About this proceeding contribution

Reference

753 cc1518-9 

Session

2013-14

Chamber / Committee

House of Lords chamber
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