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Medical Data Sharing

Volume 762: debated on Monday 1 June 2015


Asked by

To ask Her Majesty’s Government what assessment they have made of the statement by the Health and Social Care Information Centre that they have been unable to process up to 700,000 requests for individuals to opt out from sharing medical data with third parties.

My Lords, the number of personal objections to data sharing lodged with GP practices is still unconfirmed. The Health and Social Care Information Centre is working to verify this estimated number. In the interim, for anybody who has registered a data-sharing objection with their GP, the HSCIC has taken the practical decision not to collect any identifiable GP data about that person for purposes beyond their own direct care.

My Lords, in thanking the Minister for that Answer, can I clarify that I am referring to evidence given by Kingsley Manning, the chair of the Health and Social Care Information Centre, to the Health Select Committee in the other place? It concerns opt-outs from the sharing of data held by the Health and Social Care Information Centre with third parties, public and private, which could include commercial organisations. The admission was made that 700,000 people have objected to such data sharing, but the centre says that it is unable to implement or respect those objections. Will the Minister invite the Information Commissioner to investigate this worrying situation, which is undermining patient trust in NHS data sharing, to the detriment of legitimate uses for such data sharing?

The Health and Social Care Information Centre is working closely with NHS England and the Department of Health to put a method into place for resolving these issues. People’s private identifiable health information cannot be shared unless there is a legal basis to do so. Data will be held securely and will be made available more widely only in safe de-identified formats with crucial safeguards.

My Lords, in welcoming the noble Baroness to her new position, I also pay tribute to the noble Earl, Lord Howe, for his stewardship of the health brief over the last five years. Not the least of his contribution has been his willingness not just to come to Oral Questions but to do most of the statutory instruments and Questions for Short Debate as well, which your Lordships have much appreciated.

On the Question—I remind the House of my presidency of GS1—does the noble Baroness agree that it would be an absolute nonsense if those patients who wished to opt out were actually denied access to screening services? That would be the impact of putting their wishes into practice. Of course there are lessons to be learnt about mistakes that have been made, but surely the Government should be vigorously in favour of, and supporting, the proper sharing of information to the benefit of patients.

I thank the noble Lord for his kind words. I hope that your Lordships will have patience while I learn the ways of this House. Indeed, I feel that behind me my noble friend Lord Howe, who has indeed done an incredible job over the past 18 years, is sitting on his hands at the moment, longing to rush to the Dispatch Box, push me aside and take over this brief.

To answer the noble Lord’s question, the Secretary of State intimated that we are determined to guarantee that personal data are protected, and we are enthusiastic about reacting to the benefits of sharing them. Indeed, Professor Peter Weissberg of the British Heart Foundation stated:

“Locked inside our medical records is a mine of vital information that can help medical scientists make discoveries that can improve … and save lives”.

We must keep this at the forefront of our minds.

Is it not a tragedy that 700,000 patients have decided to opt out of this scheme? Is this not comparable to what happened with MMR, when mothers opted out but were subsequently found to have done so to the detriment of their children? Against that background, while of course one protects the rights of any individual to make their own decision, will the Government ensure that all publicity is put behind what my noble friend has said in her answers today?

My Lords, I think that is very true. It is important that we take the patients with us. We need to remember that an informed patient is not a panicked patient. That is why a pathfinder will be started first to ensure that we have everything in place before we roll out these data nationwide.

My Lords, I associate these Benches with the words from the noble Lord, Lord Hunt, welcoming the noble Baroness and thanking the noble Earl, Lord Howe. The noble Earl and I both have new roles in this new Parliament.

When the pause that is in place at the moment comes to an end and the programme is implemented again, will the Government undertake to implement a really high-quality public information programme that is much better than the last one, which left people not knowing what their rights were or how to opt out if that was what they wanted to do? Will the Government also do some research about the efficacy of the anonymity scheme for sexual health? Unless people have confidence that anonymity works, we are going to have a lot more than 700,000 of them opting out.

I thank the noble Baroness. Indeed that is true. That is why these pathfinders are so important. They will start in Blackburn and Darwen and make sure that all data-collection actions are evaluated and refined. NHS England has asked the National Data Guardian, Dame Fiona Caldicott, to lead an evaluation of the pathfinder stage, and nothing will go further ahead until she is satisfied that everything is in place.

My Lords, it is important to make one correction about where this information is going. It is to be used by those who will be caring for the patients or the people involved. It is not for the use of private companies.