NHS Patient Data

Jim Shannon Excerpts

Tuesday 25th March 2014 Westminster Hall

[Barbara Keeley]

Very much so. I must tell the Minister that we have not had time to absorb all of what has happened at the HSCIC, but we are disturbed by much of what we have learned. It seems as if there has been a proliferation of organisations and committees and that, as the use of that data and commercial data has burgeoned, the NHS has lost control of what is going on. That is of real concern.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing this matter to debate and on her perseverance at every stage. Does she agree that although the commitment given regarding a patient’s right to their data will be respected, perhaps patients in the NHS see this issue from their own points of view? They do not see the IT implications of what is taking place; because of that, there need to be more assurances for the patient on what happens.

[Barbara Keeley]

I very much agree. Last night I tweeted that I was to have this debate today and I was astonished with the response I got—an awful lot of people are very concerned about the issue. I will come on to opt-out in a moment, but let me conclude the point I was making about the director of public assurance’s post being made redundant. There will be considerable interest from Parliament on the basis for and the terms of that redundancy. I hope there will be no suggestion of a compromise agreement or gagging clauses. There are serious questions to ask about some of the activities.

While Dr Davies is still in post, there are a number of questions to ask about his role and those of his colleagues in the NHS Information Centre that later became the HSCIC. Dr Davies has been the chair of the four-person data access advisory group. Having two senior HSCIC employees on the advisory group on sensitive data releases, including its chair, brought criticism about a lack of independence. As chair of the group, Dr Davies also had the right to approve data releases unilaterally from the HSCIC, outside the committee. He was therefore in a powerful position. Indeed, it was reported in The Guardian last year that Dr Davies used that power to release to the Cabinet Office the confidential medical records of teenagers taking part in the national citizens service.

Perhaps more recently, Dr Davies’s views were becoming out of line on some aspects of the Government’s stance on care data. The Guardian reported in January that Dr Davies said that there was a “small risk” that certain patients could be “re-identified”, because insurers, pharmaceutical companies and other companies had their own medical data that could be matched against the pseudonymised records. He said:

“You may be able to identify people if you had a lot of data. It depends on how people will use the data once they have it. But I think it is a small, theoretical risk”.

The risks in this area have been rightly getting much attention and the Health Committee heard more about them this afternoon. Examples can be taken from the websites of both Harvey Walsh, a company that boasted of having more than a billion linked patient-level records and an ability to track patients over time, and OmegaSolver, the company with the patient analyser tool that it claimed can track patients throughout their hospital care.

In the case of OmegaSolver, its website held example screens showing use of its Patient Analyser tool, which it said could track actual patients within every hospital in England, providing up-to-date information for every disease area.