Some lively exchanges in Health Questions in the Commons today:
Mr David Crausby (Bolton North East) (Lab):
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?
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.…
Andy Burnham (Leigh) (Lab):
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.
No doubt many did not get the glossy leaflet Mr Burnham refers to. No doubt many others did get out it but binned it along with pizza leaflets without reading it. Some some further communciations effort is justified. It is right to work on the technical side to ensure that the anonymised data really will be anonymised. However the balanced approach favoured by Mr Hunt – pursuing a data revolution but allowing an opt out – seems reasonable.