Patient Medical Records

Peter Bottomley Excerpts

Tuesday 4th March 2014 Westminster Hall

[Mr Godsiff]

As usual, the hon. Gentleman makes an excellent point, which just goes to show that the Northern Ireland Assembly view the matter with more concern than the Department of Health seems to at the moment.

I say again that simply spending the next six months dropping more leaflets through letterboxes or building a website will not be anywhere near good enough. The Government must now come up with a coherent plan of how they will change care.data to address the many concerns that have been raised, and NHS England must work out how it will let people know about that.

Basically, the Government have two choices, but first they should stop fighting with GPs and patients who are unhappy with the scheme. I can assure the Minister that the GPs and patients who have contacted me have plenty of ideas about how the scheme could operate with proper safeguards built in. Will the Minister commit, during the six-month period, to engaging with GPs and patient groups about their concerns? As I have said, the Government have two options. They can either ensure that all the patient data extracted are only shared with non profit-making bodies working in the NHS or with recognised medical charities, or, and this is the second option, allow identifiable data to be extracted and used by companies for profit, but only, surely, when patients have specifically opted in to permit that.

The one thing any new scheme must have is clarity. Which datasets and variables will be released? Who decides what information or combination counts as identifiable information? Who will be held accountable if data are wrongly released and confidentiality breaches occur? What will happen if a patient withdraws their consent after data have been extracted, because they change their mind?

The Government must engage with GPs and patients. They could do far worse than look at the survey carried out by Pulse, which showed that three quarters of GPs believe that NHS England should abandon the opt-out system and ensure that data are extracted only after patients have given consent.

[Sir Peter Bottomley (Worthing West) (Con)]

Is there any reason to believe that the opt-in would end up covering more than about 13% of patients, as is the case in other countries? What use is that to future generations that want their conditions cured and their diseases ended by good medicine?

[Mr Godsiff]

If the hon. Gentleman believes that only 13% would choose to opt in, does that not prove that 87% have considerable concerns about the entire basis of the scheme? People do not want their data to be taken outside of the confidentiality agreement that exists with their GP.

[Sir Peter Bottomley]

Will the hon. Gentleman give way?

[Mr Godsiff]

I have given way on many occasions.

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[Sir Peter Bottomley]

The hon. Gentleman asked whether I agreed.

[Mr Mike Weir (in the Chair)]

Order.

[Sir Peter Bottomley]

On a point of order, Mr Weir. I do not want to intervene again, but the hon. Gentleman asked a question, the answer to which is no, it does not. Inertia is the big problem.

[Mr Mike Weir (in the Chair)]

As you well know, Sir Peter, that is not a point of order. It is up to the hon. Gentleman to decide whether to take interventions.

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[Mr Mike Weir (in the Chair)]

I call Dr Daniel Poulter.

[Sir Peter Bottomley]

rose—

[Mr Mike Weir (in the Chair)]

Order. Sir Peter is seeking to make a speech, but given the time, I can let him do so only if both the Minister and the hon. Member for Birmingham, Hall Green (Mr Godsiff) agree to it. I do not know whether the hon. Gentleman has received any notice that Sir Peter wishes to speak.

[Mr Godsiff]

A number of Members had asked me whether I would mind their interventions, Mr Weir, and I took many of them, including two from the hon. Member for Worthing West (Sir Peter Bottomley).

[Sir Peter Bottomley]

One.

[Mr Godsiff]

Well, one intervention and a point of order that was ruled not to be a point of order. Both were during the course of my 15 minutes. It is a matter for the Minister as to whether he wishes to give up some of his time for the hon. Member for Worthing West.

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[Sir Peter Bottomley (Worthing West) (Con)]

As I said in the previous debate on this issue, I am grateful that this debate has been held. Nevertheless, I hope that we will take the advice of Ben Goldacre, who said that patients should wait before they opt out and that NHS England should listen before it makes a final decision. I hope that we will find a way to satisfy people, and I strongly urge people to make their data available for the benefit of us all. That is what community is about.