|Health and Social Care Bill
Dr. Peter Brand (Isle of Wight): 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 relationship between patients and the service today has to be based on informed consent''.[Official Report, 30 January 2001; Vol. 362, c. 178.]
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 passedand restrict that to circumstances in which there is a clear need to do so, such as cancer registersor 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.
Dr. Fox: The hon. Gentleman's point is amplified by a letter signed by the president of the Royal College of Physicians, the chairman of the Royal College of General Practitioners, the director of the WHO Uppsala monitoring centre, the chairman of the Patients Association and the chairman of Depression Alliance, who make the same point. The letter states,
Dr. Brand: The hon. Gentleman is absolutely right. I do not often read the letter column in The Times, but
Dr. Fox: It was in The Guardian.
Dr. Brand: The letter the hon. Gentleman quoted was in The Guardian, but there was a similar one in The Times yesterday. It is not a matter of some off-the-wall pressure group being paranoid about what the Government might or might not be doing, or an opportunistic Opposition trying to knife the Government in quasi-indignation. We are dealing with a provision that overturns the right of patients to own their information, which has been enshrined in medical practice since Hippocrates.
I always take with a slight pinch of salt the great indignation caused by the commercial activities of certain research establishments. After all, those organisations have to make a living, and it would be difficult for them commercially if the Secretary of State had the power to restrict information being sent out. However, I cannot understand why anonymised data should worry the Secretary of State, or why it has been included in this part of the Bill. There are two quite different issues at stake. One is the need for a system that allows cancer registries to continue to function, the other is the Secretary of State's apparent attempt to slip something through that overturns an inconvenient court judgment. That is not worthy of the right hon. Gentleman. I like to talk about matters of principle and that is definitely a matter of convenience.
I would also warn the Secretary of State, and I am sure that he knows, that most research nowadays, whether it is university research, multi-centre research or research in general practice, must get some of its funding, and often all of it, from commercial organisations. The whole structure of research now depends on industry putting in money and it is important that anonymised information is available to enable that research to take place. It is important that research ethical committees should have a say over how such information is controlled.
The Secretary of State may tell us that he would like to use local ethical committees for the control of anonymised information. I would not have much of a problem with that. However, he may tell us that the Department, centrally, wants the power to impose blanket bans on the use of anonymised information. I cannot see why that should be to the advantage of the Department of Health, unless it wants to set up an arm trading in information. It would be to the detriment of research. It would discourage general practitioners from using a research-based approach.
The first time that GPs get involved in any auditing or research is often when they do some post-marketing surveillance for drug companies. That surveillance is useful, provided that it is set up properly and has been evaluated, and is not just a way of getting GPs to prescribe a drug that is three times as expensive as another one that does the same thing. That used to happen, before GPs had to go to ethical committees for that sort of post-marketing surveillance. In carrying out such surveillance, GPs are often encouraged to look at things in a systematic way for the first time, and that has enormous consequences for auditing and clinical governance.
I do not understand the motivation, unless it is a purely commercial one on behalf of the Department of Health, for introducing total control over anonymised information. My concern is that the clause and the amendments do not place a requirement on the Secretary of State or any of his agents, such as clinicians, managers or administrators, to consult with the patient, who is the owner of the information. I hope that the Secretary of State will think about those issues after we have discussed the clause and its amendments in detail, and I hope that he will return on Report with something much more fit for the purpose and much more restricted in its scope.
Mr. Paul Burstow (Sutton and Cheam) rose
Hon. Members: Oh no, not another Front-Bench speech from the Liberal Democrats.
Mr. Burstow: Hon. Members' comments about the Liberal Democrats making two speeches on this group of amendments puzzle me, because the clause warrants a great deal of scrutiny, and there are many questions to ask. I regret the implication that we should not spend time on the matter.
Mr. Philip Hammond (Runnymede and Weybridge): I speak on behalf of all members of the Committee, who were merely expressing surprise that the Liberal Democrats find it necessary to have two Front-Bench speeches on an endless sequence of clauses, when other parties manage with one Front-Bench speech for each group of amendments.
Mr. Burstow: I am interested in the hon. Gentleman's comments. I am sorry if he feels that the clause does not warrant two Front-Bench speeches. I am happy to make my speech from the Back Benches if that will help him. He ought to allow us to explore the clause in some detail, so I take it that he will make no further interventions. I am puzzled as to why he does not want us to explore the clause, as it warrants close examination. My hon. Friend the Member for Isle of Wight (Dr. Brand) made some specific points, and I want to speak to some of our amendments.
The Committee needs to consider further representations that have been made today. They add more weight to the case that the clause should not stand part of the Bill. I want the Minister to suggest that a certain process will take place after today's consideration of the clause, as representatives of many of the organisations listed by my hon. Friend and the hon. Member for Woodspring (Dr. Fox) have come to hear our deliberations today. They are alarmed about the powers that it will give the Secretary of State.
I ask hon. Members to consider the words in the Bill, rather than the words that any of us utter. They give sweeping powers to Ministers. The more I read representations and reflect on the clause and the explanatory notes, the more I think that I have not seen a clause drafted in such a way in my three years in the House. It appears to have no safeguards, limits or principles to govern its operation. That is why we have tabled some amendments on issues of public interest and patients' interests. The explanatory notes state that the clause should operate with regard to patients' interests. Will the Minister explain how he and the Department intend to translate that into practice? He must specifically tell us what principles will guide him in judging what is in the patient's interests when exercising powers under the clause.
|©Parliamentary copyright 2001||Prepared 8 February 2001|