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Dr. Fox: It is clear that the consultation on these measures that the Government believe has taken place is similar to the consultation on the abolition of community health councils. Members of the Committee would not recognise it as meaningful consultation. The Government, having been defeated in the courts, are now taking legal powers that go well beyond those required for the purpose. No proper consultation was held. The final nail in the coffin of the Government's argument was when the Minister said he had some sympathy for the sentiment expressed in the amendments. When Ministers say that it is code for the fact that they know they are on a sticky wicket. However, sentiment is not enough when it comes to the law, so we shall press the amendment to a Division. Question put, That the amendment be made:— The Committee divided: Ayes 7, Noes 9.
Division No. 9]
AYES
NOES
Amendments made: No. 334, in page 51, line 12, at end insert `for prescribed commercial purposes'. No. 335, in page 51, line 15, leave out paragraph (a). No. 336, in page 51, line 22, leave out `other'.—[Mr. Denham.] Dr. Fox: I beg to move amendment No. 326, in page 51, line 39, leave out from `expedient' to end of line 41 and insert
The Chairman: With this it will be convenient to take the following amendments: No. 331, in page 51, leave out lines 40 to 43 and insert
No. 333, in page 51, line 43, at end insert—
(a) the collection of demographic information about each case of a disease specified in the regulations; (b) the collection of administrative information, including date of diagnosis and source of information; (c) the collection of information (however recorded) which relates to the physical or mental health or condition of an individual, to the diagnosis of his condition or to his care or treatment; and (d) other information (however recorded) which is to any extent derived, directly or indirectly, from such information. (3B) Where regulations under subsection (3A) make provision for the establishment of a disease registry, the Secretary of State shall in regulations make provision for— (a) the protection of the confidentiality of all prescribed case data reported to the disease registry, including a prohibition on disclosure to any person of information reported to the disease registry that identifies, or could lead to the identification of, an individual patient, except for disclosure to other disease registries; (b) a means by which confidential patient data may in accordance with Schedules 2 and 3 of the Data Protection Act 1998 be disclosed to prescribed persons for the purposes of disease prevention, control and research; (c) a means to assure complete reporting of the prescribed disease cases to the disease registry by health service bodies with respect to the prescribed disease.'.
Dr. Fox: The amendment would remove the open definitions in subsection (3)(a) and (b), and add to the Bill the specific intended purpose of ensuring that the good work of cancer registries can continue. The disclosure of information without consent cannot be taken lightly. The clause enables the Secretary of State to make regulations requiring or regulating the process of prescribed patient information for medical purposes as he considers necessary or expedient
The Liberal Democrat amendments Nos. 331 and 333, which are supported by the British Medical Association, seek to achieve a similar goal for disease registries. As I understand it, their wording is based on the statute of the United States on the establishment of cancer registries. The United Kingdom Association of Cancer Registries is in favour of clause 59. It claims that the national system for monitoring cancer would have collapsed by the end of the year without enabling legislation. We all understand its problems. However, if clause 59 is designed to assist the cancer registries, why does it have such a wide scope? Our amendment may be simplistic, but it seeks to ensure that the national system survives, and that the Bill clearly states the purposes of the provisions. We recognise the benefits to the whole community of unbiased, high-quality information about the outcomes of cancer treatments and screening programmes. Cancer registries have performed important work in monitoring the higher cancer rates, for example, of children living near nuclear installations, the mesothelioma caused by asbestos and the wide variations in cancer treatment outcomes around the country. We all pay tribute to that work. Cancer registries are the only source of information on how many people suffer from cancer and how long they live after diagnosis. If we are to move to targets based on the outcomes and success of the NHS, rather than input targets, the survival of the registries is essential. Their staff have collected, stored and analysed identifiable data on millions of cancer patients for more than 40 years, without once breaching the duty of confidentiality owed to those patients. If I am wrong about that, I am sure that the Minister will correct me. The cancer registries have been at the forefront of developing protocols to ensure that data are safely held. In late 2000, General Medical Council guidelines were issued and caused a great deal of trouble for the cancer registries. As the hon. Member for Bristol, North-West said, there was a decline in notifications to the registries. That problem must be addressed. Although we are sympathetic to the Government's aims on the issue, we believe that the powers that they are taking to deal with the situation are unnecessarily wide. I visited the Roy Castle centre for lung research in Liverpool last week. It is a good example of why we must get the provision right. It has identified people at risk of lung cancer who would benefit from prevention and early detection programmes. The study requires not only epidemiology and molecular genetics knowledge, but large population-based studies. As the lung cancer cases being studied may present at any of six NHS trusts, they may involve many consultants. Ethical approval was granted by three local research ethics committees in 1997. At that time, and with the clinicians' agreement, it was acceptable to access a minimum of patient information without prior consent. That would allow possible subjects to be approached without causing widespread distress. We must ensure that we find the right balance. There is a clear public interest in protecting doctor-patient relationships and the information therein. I would like the Minister to address the amendment specifically, as it would make the intended purpose clear in the Bill. We believe that the powers granted in the clause are of undue scope. Both sides of the Committee agree that a problem exists and needs to be dealt with, but the powers' effect would be far wider than that. The question to be decided is what is appropriate and proportionate and I hope that the Minister will address that.
10.45 amMr. Burstow: Amendments Nos. 331 and 333—and my hon. Friend the Member for Isle of Wight and I are grateful to the BMA for its work on them—are intended to deal with a serious issue, and to enable the Committee to explore why the clause should be so widely drawn. A reason that has been advanced for its general approach is the facilitation of the production of cancer registries. The explanatory notes refer to the GMC guidance, which, it is implied, casts doubt on the potential for sharing relevant information for that purpose. We were anxious, in preparing the amendments, to establish clearly a set of procedures that would deal not just with cancer registries, but with any disease registries that already exist or might be needed in future. We wanted the Bill to include procedures enabling the conditions or diseases in question to be prescribed, and the compilation process to be specified in regulations, subject to consultation. As the hon. Member for Woodspring said, the origins of the clause can be found in United States law. We are not approaching the problem from thin air, but attempting to construct workable law. Our proposal is demonstrably practicable because it is in use in America. I hope that the Minister will accept a route that clarifies the Bill and establishes a clear mechanism for achieving what Committee members on both sides would want—the acceptance that it is appropriate, in the context of disease registries, for information to be made available, with safeguards. I look forward to hearing why a general power to allow that is preferable to the specific powers that the amendments would permit. Dr. Naysmith: I should say, Mr. Maxton, that this is the debate to which you were referring when you ruled me out of order earlier. I did not challenge your ruling. I was trying to point out the justification for clause 59, which the hon. Member for Woodspring was arguing had not been sufficiently discussed. I am in an interesting position, because I agree with most of what has been said by Opposition Members in moving their amendments. It is crucial that disease registries should be maintained. As someone who spent most of his life—when I had a real job before I came here—doing medical research, much of it related to cancer, I know the importance of maintaining the registries. That does not apply only to cancer registries, although they are the worry of the moment. I shall want my right hon. Friend the Minister to provide assurances about this when he replies. Perhaps I shall even vote for a Conservative or Liberal Democrat amendment, which would really be news.
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