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

Indeed, and I say that they “held” that information because websites such as those that I mentioned were suddenly altered when attention was drawn to the capabilities that those organisations claimed to have when it came to tracking patients. The Minister and hon. Members may have seen reports about how the medical histories of people in public life could be tracked using online tools of that type. Widely reported accidents or medical procedures undergone in NHS hospitals clearly provide enough information to spot one patient event in the records and then read across to every hospital visit for that individual.

I ask the Minister not to echo the mantra he has used before or the one the HSCIC used when asked about OmegaSolver—that only aggregated patient data are used and that that does not represent the experience of an individual. It is clear that commercial companies granted commercial reuse licences have claimed that they can track

“actual patients within every hospital within England”.

As I said in the recent debate on the Care Bill, the hospital episode statistics database was originally an administrative database. When did any of us sign up to having our data used to recalculate the cost of insurance cover or by pharmaceutical companies as customers of OmegaSolver? I do not recall signing up to that and I am sure that other hon. Members did not, either.

Does the Minister agree that perhaps we should go back to thinking that patients should have the option of having their data used only for clinical care and for commissioning that care? In his response in the Care Bill debate on these issues, the Minister said that

“people can, at any time, object or change their mind, and the Health and Social Care Information Centre must respect their wishes and remove their data from records.”—[Hansard, 11 March 2014; Vol. 577, c. 206.]

At the time he said those words, I thought, “That is not currently the case.” I understand that deletions are not permitted and, once a patient’s record has been extracted, they cannot get it removed from the database. If it is in fact a new development that patients can change their minds and request that their data be removed from the records held by the HSCIC and by commercial companies, that will be welcomed, but I really look forward to the Minister telling us how that happens.

I gave the example of Harvey Walsh. They have described themselves as main suppliers of hospital episode statistics and NHS data to the pharmaceutical industry. Can the Minister tell me how an NHS patient can have their records removed from Harvey Walsh’s AXON database or any of the other databases that are outwith the HSCIC?

In the Care Bill debate, the Minister was also asked a question about whether free text would be uploaded from patient records either now or in the future, and he answered:

“As things stand at the moment, free text is not going to be used. That is the reassurance given by the HSCIC”.—[Hansard, 11 March 2014; Vol. 577, c. 206.]

However, Professor Julia Hippisley-Cox and Professor Ross Anderson have pointed out to Health Committee members that researchers already make use of free text from GP patient records. Indeed, medical students and computer science postgraduates at the university of Sussex and at Brighton and Sussex medical school have begun work on analysing doctors’ notes for data from free text.

The data being used come from the Clinical Practice Research Datalink, and Select Committee members were told that those patient data are being used without specific patient consent or section 251 support—it is section 251 of the National Health Service Act 2006. If the HSCIC has given the Minister an assurance that free text from GP records will not be used, can he tell us whether and when the use of free text from GP patient records in the CPRD will be stopped, particularly given that that appears to be happening without patient consent? Patient consent is important, and I still get the feeling from the HSCIC that individuals are somehow being labelled as selfish if they have concerns about sharing their data.

I want to come back to concerns about the existence of the commercial reuse licences granted by the HSCIC. I have tabled a written parliamentary question on this, but I also put the question to the Minister now. He has confirmed that the HSCIC has granted commercial reuse licences. Will he now provide me with a list of each past and present holder of a commercial reuse licence granted and, for each licence holder past and present, will he list the purpose or purposes for which they applied and were approved to use NHS patient data from the HSCIC and its predecessor, the NHS Information Centre? As patients of the NHS, we deserve to know in which places and with which organisations our data are sitting and what they are being used for.