Clause 59 - Control of patient information
Health and Social Care Bill
9:30 am
Dr Peter Brand (Isle of Wight, Liberal Democrat)
This group of amendments is about consultation. It is a great pity that the Government did not consult before they put the Bill before the House, as the clause has enormously wide-ranging implications. I will approach the matter more from the point of view of an individual patient rather than from that of research, which I will turn to later.
The Government need to take action on the possible problems that the provisions could cause to the workings of disease registers, especially cancer registers. When something of common usage has not been objected to by patients or their relatives, and has contributed enormously to our understanding of disease processes, we accept that it should not be hampered by subsequent legislation on data protection. The Government were right to seek a mechanism to cope with what was seen as a problem by some cancer research charities and other relevant parties.
The Government have done a great deal more than simply solve that problem, however. Under the Bill, the Secretary of State will have unprecedented powers over clinical information, anonymised or not. There is always conflict between the interests of patients collectively and the interests of patients as individuals. However, unless there are overwhelming reasons, it is the patient as an individual whose rights should be protected the greatest. The Secretary of State stated, in relation to the inquiry into the Royal Liverpool Children's NHS Trust:
``The national health service can no longer assume that the benefits of science, medicine or research are somehow self-evident, regardless of the wishes of patients or their families.
The relationship between patients and the service today has to be based on informed consent''.—[Official Report, 30 January 2001; Vol. 362, c. 178.]
If that holds for doctors—and it should—it should also hold for the Secretary of State. The Bill contains no requirement to consult individuals whose information is being traded or shunted about by the Secretary of State, and that is an enormous cause for concern.
We received a significant late submission from the chairman of the Patients Association, the director of Positively Women, the director of the National Aids Trust, the director of Pan London HIV/AIDS Providers Consortiums, the chairman of the UK Coalition of People Living with HIV and AIDS and the Network of Self-Help HIV and AIDS Groups. They are significant bodies and have not bought the Minister's reassuring words.
The Minister is a reasonable man, and I like to believe his reassurances, but Ministers come and go. I am not implying that his colleagues are unreasonable men or women, but that we might find such an interpretation less acceptable in respect of future changes.
The Government have gone in completely the wrong direction. Either the Bill should specify the terms under which information can be passed—and restrict that to circumstances in which there is a clear need to do so, such as cancer registers—or the Government should issue guidelines that are not enforceable by statute. We now have the worst of both worlds. The Government want to introduce through regulation rules that override the traditional and proper right of patients to control information that pertains to them.
That is my difficulty with the clause. I doubt whether the clause as it stands can be amended sensibly, although we will do our best. Given the well-argued objections to the clause, the Government should have done more than table a few amendments that merely add a few soothing words and do not change the essential framework, which gives absolute power.