NHS Patient Data

Dan Poulter Excerpts

Tuesday 25th March 2014 Westminster Hall

[The Parliamentary Under-Secretary of State for Health (Dr Daniel Poulter)]

It is a pleasure to serve with you chairing the debate, Ms Dorries. In some ways, I wish that we had new issues to discuss; many of the issues that we are discussing today we have thrashed out on a number of occasions in the Care Bill Committee and the Report debate earlier this month, so I am not convinced that there is a lot of new information that I can bring, other than giving further reassurances along the lines of those that have been given. However, it is important to make two points at the outset.

I congratulate the hon. Member for Worsley and Eccles South (Barbara Keeley) on initiating the debate and on her ongoing interest in this topic, but if she has concerns about a witness not giving correct information to the Select Committee, it is of course at her disposal to speak to its Chair, my right hon. Friend the Member for Charnwood (Mr Dorrell), and ask him to take that up with the witness. If she has those concerns, I suggest she does that. Of course, it is very easy to take comments—a few sentences—out of context. It may be that that is the case here; it may be that there are genuine concerns, but if the hon. Lady has those, it is for her to take them up with the Chair of the Committee and ask him to take the matter further.

[Barbara Keeley]

Will the Minister let me clarify the point?

[Dr Poulter]

I will give way in one moment. It is also the case, in relation to a number of the other issues and concerns that have been raised during this discussion, that some of the events and some of the evidence given to the Select Committee have of course been superseded by the amendments made to the Care Bill that we debated a couple of weeks ago, so it is difficult to see those points—

[Grahame M. Morris]

Will the Minister give way?

[Dr Poulter]

I am giving way to the hon. Gentleman’s hon. Friend in one moment. Let me complete the explanation and then I will be very happy to give way. Events have moved on since some of those evidence sessions, because of course amendments were made to the Care Bill that gave greater clarity and greater reassurance about the protection of patients’ data.

[Barbara Keeley]

Before the Minister moves off the point about the misleading evidence given to the Health Committee, may I put this to him? The Minister was there with Max Jones and Tim Kelsey—they were there supporting him at the Committee—and I think that this really is down to the Minister. I have, of course, raised the matter with the Chair of the Select Committee, but if a Minister brings civil servants and NHS employees with him to a Committee and those civil servants mislead the Committee—giving incorrect answers not once but twice—I think that it is really down to the Minister to raise the issue as well.

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[Dr Poulter]

The hon. Lady will recognise that NHS England is an arm’s-length body, so it has less accountability than—or certainly not the same accountability as—a civil servant does to a Minister, and it has a degree of independence. If there are concerns to be raised, as she has just outlined, it is for the Chair of the Committee to write to obtain clarification if he believes that to be appropriate. I am sure he will do so if he feels that that is right. It is not for me, as a Minister, to interfere with the workings of a Select Committee and I do not propose to do so.

[Grahame M. Morris]

Will the Minister give way?

[Dr Poulter]

No. I have listened to the same speech from the hon. Gentleman as did my right hon. Friend the Member for Chelmsford (Mr Burns). The hon. Gentleman is always very helpful in tying himself in knots and confusing debates. On this occasion, however, I will make some progress, because I have got 10 minutes left and I would like to put down some further reassurances. I may give way later on, time permitting.

Once again, I congratulate the hon. Member for Worsley and Eccles South on securing the debate, and I would like to say at the outset that we all believe care.data to be a good thing. It is good news for patients, for improving transparency in health care and for improving the quality of research. Those are undoubtedly good things, and we must not lose sight of them in our discussion. The lessons of Mid Staffordshire point out that if we do not properly expose examples of bad care—if we do not have the data, and the transparency in the use of those data, to expose good and bad care in the NHS—bad things can happen to patients. That is a lesson that we must heed.

We must also recognise that if we had had better data sharing in the past, we might have been able to learn better how to recognise patterns in prescribing that were to the detriment of patients, such as the example that has been cited of the use of thalidomide during pregnancy. We might have avoided some very bad things happening to patients if we had had the necessary data. That is what our proposals are about.

This is not a sudden, big-bang change. Opposition Members have put it about that we are dealing with a big change in approach to the use of data in the NHS, but I remind the Chamber that in 1989, hospital episode statistics were first collected for in-patient data, in 2003 for out-patient data and in 2007-08 for A and E data, and primary care data are now being made available.

Of course we understand that the use of data can be concerning, so I want to reassure everyone that the right safeguards are in place, many of them established by the Health and Social Care Act 2012. The new body, the Health and Social Care Information Centre, must have regard to the safeguards put in place by the 2012 Act. The Government take the safeguarding of patient data very seriously.

The commercial reuse of licences was raised in the debate. The Health and Social Care Information Centre has confirmed that some reuse agreements remain in place for specific organisations in relation to approved purposes. The purpose of each application is carefully considered by the HSCIC before it is agreed. That consideration includes the application’s benefit to the health and care system, a safeguard established by the 2012 Act for the use of data.

[Grahame M. Morris]

Will the Minister give way?

[Dr Poulter]

I will give way in a moment; I am just going to finish this point. Following concerns expressed by the Health Committee in its meeting of 25 February, Sir Nick Partridge, a non-executive director on the HSCIC board, has agreed to conduct an audit of all the data releases made by the predecessor organisation, the NHS Information Centre, and report on that to the HSCIC board by the end of May.

Furthermore, a report detailing all data released by the HSCIC, including the legal basis on which those data were released and the purpose to which they are being put, will be published by the HSCIC on 2 April. That report will be updated quarterly. I reiterate that the HSCIC will release information for health and care uses only.

[Grahame M. Morris]

The Minister is arguing that the scheme is an extension of what happened before, but there is clearly a quantum difference. There is general agreement that it is a wonderful thing to have data sets for research and public health purposes. The difficulty that the public have, about which we need to restore confidence, is when that information is being used for marketisation—for marketing purposes—by commercial reusers. I am not reassured by the Minister’s comments, but he has an opportunity to correct the problem in the House of Lords.

[Nadine Dorries (in the Chair)]

Order. Mr Morris, that is a very long intervention.

[Dr Poulter]

It is difficult to reply fully to such debates when we have very lengthy interventions, of which the hon. Gentleman is very fond. I would like to spell out to him what the quantum difference is. The Government have, through the 2012 Act, put in place safeguards for data protection that the previous Government never had. In particular, under the 2012 Act, data can be used only for the benefit of the health and social care system. We have put in place the safeguard that people can opt out from having their data collected and used. Those safeguards were not in place when the previous Government—

[Barbara Keeley]

Will the Minister give way?

[Dr Poulter]

No, it is important to make these points. The hon. Lady is very party political on the matter, and it is important that she recognises failings that existed in the past. I have mentioned the collection of in-patient data from 1989, out-patient data from 2003 and A and E data from 2007-08. I am not aware of any safeguards put in place by the previous Government to allow patients actively to opt out of the collection of those data. If she is aware of any, I would like her to clarify the record.

[Barbara Keeley]

The Minister is talking about opt-out, but I asked him a specific question about commercial reuse licences. I understand that there are at least six of those—six massive copies of all hospital episode statistics data—out there. How does an NHS patient get their data deleted from those copies, which sit with companies such as Harvey Walsh and OmegaSolver? How does that happen?

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[Dr Poulter]

The point is that people have the opportunity to opt out of the programme if they wish to. The HSCIC can also put in place contractual safeguards if there are sensitivities around data. Our amendments to the Care Bill created a “one strike and you’re out” situation for any companies that use data, whereby if there is any misuse of data, they will be struck off.

The safeguards established by the Government—those in the 2012 Act and the announcement by my right hon. Friend the Secretary of State that people could opt out of the collection and use of their data—are welcome. Such safeguards never existed under the previous Government, and we have made good progress in protecting patient confidentiality, although that is not to say that we do not need to reassure the public further.

We must make sure that we have rigorous processes in place. In the brief time available, it is worth outlining some of the strong measures in the 2012 Act, which established the HSCIC and set out the framework in which it will operate to ensure that data are being used appropriately. Under section 260 of the 2012 Act, the HSCIC must not publish the information it obtains in a form that would enable an individual other than a provider of care to be identified. That is a strong protection for individual confidentiality in the publication of data.

Under section 261, the HSCIC cannot disseminate or share data that could be used to identify an individual other than a provider of care except where there is another legal basis for doing so, which, as we have said, would be only in extreme circumstances such as a civil emergency. Under section 263, the HSCIC must publish a code of practice clarifying how it and others should handle confidential data. Under section 264, the HSCIC must be open and transparent about the data it obtains by publishing a register with descriptions of the information. The HSCIC is working now to ensure that it is transparent about all the data it has released to others.

Moreover, the Government have already introduced the commitment that if someone has concerns about their data being used in such a way, they can ask their GP practice to note their objection and opt out of the system, after which no identifiable data about them will flow from their GP practice to the HSCIC. Directions to the HSCIC under section 254 of the 2012 Act, which are separate from the amendments considered by the House as part of the Care Bill, will ensure that that commitment to patients has legal force.

There are strong safeguards in place, and Opposition Members would do well to recognise that the 2012 Act has put us in a much better place. Safeguards are in place that never existed when the previous Government extended the use of data sharing in the NHS. We all recognise the benefits of care.data, and we must recognise that, with the additional safeguards in place, we will have a system that will help to improve health and care research and the quality of care available to patients.