My Lords, when many members of the public, and patients in particular, feel that their data may be mis-sold to insurance companies or other bodies that may use them either to increase premiums or for their own personal benefit, then we have a problem. Earlier this afternoon we had assurances from the Minister that that would not be the case. This must be information that is used for non-commercial purposes, which has been made very clear. It is important, too, to remember that patients can opt out. I have heard these expressions about the difficulties that they may have with GPs who might prevent their doing so, but they have a choice. They may well opt out. I believe that if we go ahead with care.data and provide the information as needed, many patients, in time, will see the benefits of this and will choose to opt back in.
We have also talked about the need, again, to have anonymised data and to prevent it going anywhere other than the non-commercial areas. Patients also have a right to decide what to do with their data; it is enshrined in the NHS constitution that they have rights on the disclosure of their personal data. I personally feel that all patients should have their own information—they should have their own notes. They should have a memory stick with their records and have ownership of their records. They can then determine, in the circumstances, where that information goes.
Many people are horrified by the idea of patients having their own records. I had experience of this in 1973, when I was a surgeon working in Ghana. Patients would come with their own notes, moth-eaten and dog-eared. The reason was very simple: if their notes were in the hospital, a certain bribe had be paid before those notes could be released. Patients have always been suspicious about what happens to their notes. Give them to them—that is what I would say.
The proposal from the noble Lord, Lord Owen, for yet another layer of scrutiny above what is being proposed, is something that we should consider very carefully. He referred to the fact that it would be for the Secretary of State and NHS England to make those decisions. However, noble Lords will recall that when we debated this matter not that long ago, the noble Lord, Lord Willis, and others put forward a proposal for the Health Research Authority. If this Bill goes through, the Health Research Authority will have the authority to decide how information is disclosed. Therefore, I speak very strongly in support of the care.data programme. It is important for patients to be reassured and that point has been well made from all sides of the House. They clearly have to have that reassurance. However, I see no need for an extra layer or an oversight panel. That would provide just one more barrier for researchers to climb.
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