Patient Medical Records

Debate between Roger Godsiff and Sarah Wollaston

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.