NHS Patient Data

Part of the debate – in Westminster Hall at 4:00 pm on 25th March 2014.

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Photo of Barbara Keeley Barbara Keeley Labour, Worsley and Eccles South 4:00 pm, 25th March 2014

I, too, hope that the Minister will address that.

I want to give an example of data use approved by the Data Access Advisory Group of the Health and Social Care Information Centre, because I think that it is instructive. Minutes from the group’s July meeting show that the advisory group approved the use of hospital episode statistics data for HSpot Ltd and its FindMeHealth application. HSpot Ltd had requested HES data, including consultant codes, with the intention of publishing those data online to enable patients to compare procedures by hospital and clinician. Online information about FindMeHealth says that it is

“a new independent UK comparison site offering choice…to the growing number of people who are choosing to self-pay for private healthcare.

FindMeHealth compares prices across the top self-pay procedures and gives users access to the very latest data from NHS and private sources”.

What we have here is a kind of “Go Compare” website for private health care.

Much was said about uses of patient data in the debate on the Care Bill. The Minister said that information from the HSCIC

“may be disseminated for the purposes of ‘the provision of health care or adult social care’ or ‘the promotion of health’.”—[Hansard, 10 March 2014; Vol. 577, c. 136.]

Does the Minister think that the definition that he gave us extends to the HSCIC granting the release of patient data so that commercial companies can run comparison websites on the top self-pay procedures?

We need much greater transparency, and I thank hon. Members present for the questions that they have put on this matter. We need greater transparency from the Health and Social Care Information Centre, but we also need it about the other data sources and the other places where data are held. The chair of the information centre, Kingsley Manning, said in his speech last week that one of its key measures of success might have been that it was

“safely below the radar of public attention”,

but that organisation is no longer below the radar of public attention. Indeed, the organisation has become the story because of the errors that it has made, which mean that hon. Members and the public have discovered just how their confidential medical data are being used by insurers, by commercial companies and even on systems in the United States.

If people look at social media, as I did last night, they will see that there are many comments about just how much distrust people now feel towards the HSCIC. The organisation, as I said at the start, has claimed an “innocent lack of transparency”, but others accuse it of evasiveness and half-truths. As I have detailed, giving misleading answers to the Health Committee on established facts about who works for the organisation does not help.

All that has to change. Hon. Members, including me in this speech, have talked about ways in which the situation should and must change, and I hope that the Minister understands the vital need for that.