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My Lords, NHS England’s care.data programme takes forward the ambitions set out in the Government’s information strategy for health and care in England, The Power of Information, published in 2012, in particular elements of chapter 5 of the strategy. The Department of Health strongly supports NHS England’s decision to do more engagement work before data collection takes place. This is a vital programme which will bring real benefits to patients.
My Lords, I am grateful to the noble Earl for his response. Few people doubt that there are enormous benefits to be gained from patient data, both for the care and treatment of patients at the moment and for research into treatment for future patients. However, does the noble Earl agree that NHS England has been remarkably unsuccessful so far in communicating both the benefits and the safeguards to confidentiality? Does he further agree that it is vital that NHS England uses the next six months, which is the delay, to develop some robust and convincing methods of communicating with the public?
I entirely agree with the noble Lord. This is a vital programme which will bring real benefits to patients. It has major potential benefits for research and public health. It commands generally wide stakeholder support. However, there is no doubt that concerns over how this has been explained to patients have been raised and those concerns need to be addressed. I agree that the next six months will be crucial in pursuing that aim but it is essential that this programme commands public support.
My Lords, I declare an interest as professor of surgery at University College London. What assessment have Her Majesty’s Government made of the proposed European data protection regulation which, if passed, has the potential to impact seriously on our national strategies with regard to health informatics and biomedical research?
My Lords, we take that concern extremely seriously. The draft text that has been published by the so-called LIBE committee would, if enacted, pose serious obstacles for our research effort in this country.
We are taking every opportunity and using every effort to persuade both the Parliament and the European Commission that the original text is the one we should go with. That work is on-going and the Ministry of Justice is leading on it.
Will my noble friend assure the House that the leaflet which was recently sent out, and which was far from satisfactory, will be replaced by something that really communicates what people need to know?
My Lords, I am aware of concerns around the leaflet. Many people have said that they have not received it, which is clearly a concern. NHS England, which is leading on the development of the programme, will consider how to ensure that it engages fully with stakeholders and the public over the coming weeks and months and respond to the concerns that have been raised. The Government will also be engaging with stakeholders to see what we can do from a broader perspective.
My Lords, I refer noble Lords to my health interests. Is not one of the problems that if a patient wants to opt out of the system they have to go to or communicate with their general practitioner? I am sure the noble Earl will have seen the report at the weekend from the Royal College of General Practitioners that GPs are sometimes rather difficult to find. Would it not give the public more confidence if they could opt out in a straightforward way rather than have to go to see their GP and then depend on the GP to enact that in practice?
My Lords, I cannot agree with that. The GP surgery is where the records are kept and would seem to be the natural place for patients to go. They do not have to make an appointment to do that. If they are concerned, they can write a letter or send an e-mail to the GP practice and then have a conversation later if they would like to. I do not think this is a difficult process.
My Lords, it is clearly illegal for anonymised data to be worked back and then aggregated with other available data. Can the Minister assure the House that the Government will consider increasing the penalties for infringing personal data, including prison sentences for serious breaches and a ban on the offenders and their organisations accessing any data for up to 10 years? This is because current organisations are often not taking seriously breach-of- data fines.
My Lords, I have seen quite a lot of comment on this aspect of the issue in the press. At present, the Information Commissioner’s Office already has the power to impose a fine under Section 55A of the Data Protection Act and the current penalty is up to £500,000, which is quite a severe penalty. To amend that would require changing the Data Protection Act and, at the moment, the Government have no plans to do that.
My Lords, does the Minister accept that all appropriate steps are being taken to protect the anonymity of these data? In the light of that, is it not more important to the future of medicine in this country that the availability of this massive database should be taken advantage of in relation to medical research, which will in turn have the undoubted effect of giving huge potential for improvement in patient care?
The noble Lord is absolutely correct. It is worth pointing out that the vast majority of medical research in this country relies on fully anonymised data. It does not require patient-identifiable data. An organisation making an application for information that is identifiable would be allowed to do so only if it had obtained patient consent or had been granted legal approval to do so, either by the Secretary of State or the Health Research Authority, or where there is a public health emergency of some kind.