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General Practice Extraction Service

Volume 576: debated on Tuesday 25 February 2014

People can opt out of the care.data programme through their GP surgery. Depending on the surgery, that may well be done online or by telephone.

Is the Secretary of State aware that the Government’s handling of the scheme has been shambolic from the very start and that their failure to communicate is nowhere better illustrated than in Pulse, the GP’s magazine, in which an article states that only 15% of members of the public surveyed knew that they had the right to opt out? What will he do to restore public confidence in a scheme that could be very beneficial?

It is a pleasure—I think for the first time—to take a question from someone who might be one of my constituents in Godalming. However, I do not agree with the hon. Gentleman that the process has been shambolic. The programme has been in place for 25 years, so it is important to understand that this big public debate is happening because this Government did something that the previous Government did not do: we said that if we are going to use anonymised data for the benefit of scientific discovery in the NHS, people should have the right to opt out. We introduced that right and sent a leaflet to every house in the country, and it is important that we have the debate—[Interruption.] The right hon. Member for Leigh (Andy Burnham) complains, but he did not want to give people the right to opt out when he was Health Secretary.

The Secretary of State will be aware of the report in The Daily Telegraph setting out how hospital episode statistics data were sold to insurance companies, which were able to match that information with credit ratings data. Nothing will undermine this valuable project more than a belief that data will be sold to insurance companies, so will he set out the way in which he will investigate how that sale was allowed to happen and categorically reassure the House that there will be no sale of care data to insurance companies?

My hon. Friend is absolutely right to raise that issue and I am happy to give that assurance. That incident is one of the reasons why we set up the Health and Social Care Information Centre through the Health and Social Care Act 2012, in the teeth of opposition from the Labour party. Following the establishment of the centre, the guidelines in place mean that such a thing could not happen. She is also right that it is important that we reassure the public because, let us not forget, it was this important programme that identified the link between thalidomide and birth defects, that identified that there was no link between MMR and autism, and that helped to identify the link between smoking and cancer, so it is vital that we get this right.

20. Virtually everyone wants to improve patient care in the NHS, so why not scrap the underhand way in which the care.data programme has progressed so far, and instead provide a diverse choice of ways to opt in, limit the use of medical data to the NHS and keep the public’s personal information out of the hands of the private sector? (902643)

May I gently tell the hon. Gentleman that the reason why we are having the debate is that this Government decided that people should be able to opt out from having their anonymised data used for the purposes of scientific research, which the previous Labour Government refused to do? When they extended the programme to out-patient data in 2003 and to A and E data in 2008, at no point did they give people the right to opt out. We have introduced that right, which is why we are having the debate.

There are of course huge benefits from using properly anonymised data for research, but it is difficult to anonymise the data properly and, given how the scheme has progressed so far, there is a huge risk to public confidence. Will the Secretary of State use the current pause to work with the Information Commissioner to ensure that the data are properly anonymised and that people can have confidence in how their data will be used and how they can opt out?

I will do that, and NHS England was absolutely right to have a pause so that we ensure that we give people such reassurance—[Interruption.] When we had a pause before, the result was the very good Health and Social Care Act, which is doing good things for patients throughout the NHS. This programme is too important to get wrong, and while I think that there is understanding on both sides of the House about the benefits of using anonymised data properly, the process must be carried out in a way that reassures the public.

When he was appointed, the Health Secretary declared it his personal mission to have a “data revolution” in the NHS, but what he has presided over is a spectacular collapse in public confidence in the use of patient data. The only revolution he has created is a growing public revolt against his care.data scheme. Coming after his NHS 111 shambles and the court humiliation over Lewisham hospital, it cements a reputation for incompetence. When was he first warned about problems with care.data and what action did he take?

The shadow Secretary of State searches for NHS crises with about as much success as George Bush searching for weapons of mass destruction. My first contact with that programme, when I was told about it, was to decide to do something that he never did as Health Secretary: to say that every single NHS patient should have a right to opt out of having their data used in anonymised scientific research. I think that was the right thing to do. Of course we are having a difficult debate, but its purpose is to carry the public with us so that we can go on to make important scientific discoveries.

Again, the right hon. Gentleman never takes responsibility—it is always somebody else’s fault. Even by this Government’s standards, this is a master-class in incompetence. First, we have this useless glossy leaflet. He said that it has gone to every home, but that is not true, because homes that have opted out of junk mail have not received it. Many people report that they still have not had it through their letterbox. Secondly, when people cannot even get through to their GP practice on the phone, as we heard earlier, or get an appointment, he has made it almost impossible to opt out of the scheme. Has this cavalier approach not built an impression that the Government are taking patient confidentiality for granted in trying to force through the scheme, increasing public mistrust and putting the important scheme at risk?

It is intriguing that the shadow Secretary of State has chosen not to talk about a winter crisis, because it has not happened, despite the fact that he predicted it time after time. Let me tell him what was cavalier: the previous Labour Government’s refusal to give patients a right to opt out of giving their data to this programme, even though it was going on for their whole time in office. We believe that we should have a data revolution, but to do that we need to carry the public with us, which is why we need to have this important debate and give people the reassurance they deserve.