Patient Medical Records

Sarah Wollaston Excerpts

Tuesday 4th March 2014 Westminster Hall

[Mr Roger Godsiff (Birmingham, Hall Green) (Lab)]

It is always a great pleasure to serve under your chairmanship, Mr Weir, and I welcome the opportunity to make a contribution to today’s debate on how our health service can use patient data to improve health care.

Using data collected by the NHS to improve patient care sounds like a wonderful idea and it should be something that we can all support. However, almost nobody in the country, apart from NHS England, the Department of Health and companies with a commercial interest in the area, support what has been proposed. The scheme, which had the chance to bring about huge benefits for patients, has suffered from a complete failure to listen to either patients or doctors. The bottom line is that people simply do not want their medical data to be sold to the private sector or used for profit-making activities, and no amount of awareness raising or leafleting will change that.

I want to ensure that we have a consent-based model for using patient data that patients are happy with and have confidence in. Patients’ opinions should be used to inform the way in which care.data works and not trampled over in the hurry to extract data. Patients matter, but we have heard no apology to all those who were not properly informed about care.data and whose confidential data would have been extracted without their knowledge if there had not been this hastily arranged delay. Why, I ask, have we had no apology to the in-patients who did not receive the leaflet, those with learning difficulties or visual impairments who could not read or understand it, and those whose first language is not English, or to the elderly, sick and infirm, who could not get to their GPs to discuss the scheme?

[Dr Sarah Wollaston (Totnes) (Con)]

I fully support the principles behind care.data, but I think we need balance here. Does the hon. Gentleman accept that no patients were informed at all about the fact that their hospital episode statistics data were being released under the previous Administration, and they had no opportunity either to opt in or opt out?

[Mr Godsiff]

I certainly accept that, and I know that the hon. Lady has already raised that with the Government. I think the Government gave an answer, then had to apologise for the answer they gave and had to correct it.

[Dr Wollaston]

I was referring to the Labour Government.

[Mr Godsiff]

Well, there is not a Labour Minister responding at this time; there is a Minister from the Department of Health, which is peopled by members of the coalition Government.

Let me make it clear: this is not an argument between people who are in favour of research and those who are against it. Of course, we all want to facilitate life-saving medical research, but I want to do so without damaging patient confidentiality or public confidence in the NHS. We now have another chance to get this right, and we have six months in which to do that.

--- Later in debate ---

[Dr Poulter]

I am not going to give way because of the time. I have not said anything controversial; I am just reiterating the fact that a lot of the issues that have arisen today were discussed at great length during scrutiny of that Bill. The hon. Gentleman will recall that as he made many interventions and speeches in Committee.

We need to highlight the importance of this issue. We must ensure that we have the right data and the right processes in the NHS to inform good care. It is about ensuring that we have the data to improve research, to drive better integration and, in the wake of the Mid Staffs scandal and the Francis inquiry, to ensure transparency in protecting patient confidentiality and in the quality of care provided by health care providers so that we can ensure that high quality care is provided throughout the NHS and that its quality is properly scrutinised. We must learn from examples of good care, and where, by comparison and other standards, care is not good it should be transparently exposed.

There are important research benefits, too. We know that if we want to combat disease, address some of the challenges that we face in the health system and improve our knowledge of diseases from cancer to heart disease, we need to have the right information. We have to ensure that we collect data and information to improve patient care, which is the heart of everything we are talking about today. As long as we do that—I believe that we have the right safeguards in place through the 2012 Act and through the further clarifications and reassurances provided by the amendments to the Care Bill that have been tabled for next week—we are in the right place to deliver improved transparency and care quality while ensuring that we protect patient confidentiality, in which we all believe.

[Dr Wollaston]

I am passionate about the principles of care, data, and I will not be opting out because of the benefits that the Minister and many others have outlined. He mentions the Francis report, and one of its fundamental principles was that people should be open and transparent about past errors and take account of genuine concerns. I am concerned that what we are hearing from the Health & Social Care Information Centre is very defensive. There is a complete refusal to be transparent about errors; it is blaming everything on a previous body. Many members of those two bodies are the same, so for us to proceed with confidence those legitimate concerns must be addressed.

[Dr Poulter]

My hon. Friend makes an important point. It is also important to highlight that sections 263 to 265 of the 2012 Act put much stronger safeguards in place. Those sections state that processes must be in place in the Health & Social Care Information Centre to ensure confidentiality and to ensure that data are always handled in the right way. The body is responsible for ensuring that those processes are kept up to date and that there are accountability frameworks for those processes. That important step forward was not in place for the previous body.