Draft Health Service (Control of Patient Information) Regulations 2002

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Ms Blears: The purpose of the regulations is permissive: to allow information to be used. The right hon. Gentleman referred to the power in regulation 2 to require information to be used. If there was an epidemic of a notifiable disease and it was vital that information be provided, the Secretary of State could decide to require that information, but

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he would have to do so on the advice of the patient information advisory group. The Government do not intend to require doctors to reveal information.

Dr. Fox: The Minister said that the Secretary of State would be required to take advice. I am sure that she will want to confirm for the record that he is not so required by any of the regulations before us today.

Ms Blears: With respect, section 60 of the Health and Social Care Act 2001 resolved that the patient information advisory group would have a key role to play in considering applications, setting out advice and publishing the minutes of its meetings. If the Secretary of State is to depart from its recommendations he has to say why. This is a robust system of checks and balances.

If we acknowledge that we have to move from a system that does not have confidentiality at its heart to one which will have far more confidentiality, we must ensure while we are putting the building blocks in place that we have a framework to support essential activity. We cannot risk some of the most important health service work programmes grinding to a halt because they are unable at present to meet required standards.

We do not think it appropriate that NHS staff, who are working hard for all of us, should bear the burden of working without a robust basis in law and constantly at risk of being exposed to litigation. These are the key reasons why section 60 was included in the Act. It is intended largely as a transitional measure and is not set in stone. It does not specify that the information will be used forever without consent. It will allow essential NHS activities that rely on access to confidential patient-identifiable information to continue while the NHS devises procedures for satisfying the obligations of confidentiality.

That is the honesty of the regulations: they recognise that we need to do far more to anonymise and encrypt data to strip out as much confidential patient-identifiable information as possible while maintaining core activities. The Government are courageous to say that this is the truth of the situation. We are putting in place a framework that moves us from an unsatisfactory, woolly, nebulous and blurred situation to one that is clearer and more direct and transparent.

Dr. Evan Harris (Oxford, West and Abingdon): I agree with the Conservative spokespeople that a one-and-a-half hour debate is not adequate to discuss the detailed issues. The Minister should not over-egg courage and honesty in the Government's health service policy, but she has a point in that where we are now is light years away, in terms of recognition of a duty of confidentiality beyond implied consent, from, say, 10 years ago. I hope she will agree that critical to this discussion is the reiteration that the provision is transitional and that every effort will be made, including making resources available, to

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ensure anonymisation, so that transitional arrangements are no longer necessary.

Ms Blears: The hon. Gentleman makes an important point. I draw his attention to the advice of the patient information advisory group in relation to the application for cancer registers. Even in that narrow, defined, well-accepted and established area, the PIAG says that steps must be taken to devise a policy for data retention and disposal. That presses them further towards ensuring that their systems are more robust. The regulations offer us a system that is not cast in aspic, but provides momentum for a review every 12 months to see what progress has been made on anonymisation, encryption and data, and that constantly brings pressure to bear to drive those matters forward. The PIAG will prove to be a driver in the system to ensure that there is no lazy attitude towards confidentiality. That attitude needs to be stripped out wherever possible.

Dr. Harris: On the basis of her remarks, will the Minister admit that she is grateful that the Government were dragged kicking and screaming in the House of Lords to accept the PIAG and significant amendments to the original proposal in the Act? Such honesty and courage would match the occasion.

Ms Blears: Indeed. I was not present during the debate on that legislation, so I do not know the trauma that it caused. In my dealings with the chairman of the PIAG, I have been impressed by the breadth of its membership, the seriousness with which it has undertaken its task, the detailed way in which it considered the regulations, and its robustness in refusing some applications. It has not simply passed every application, but has been rigorous in deciding what to approve.

The regulations are in two parts. The first part outlines specific activities that require access to patient-identifiable information, which have shown that they cannot currently satisfy common law requirements. Those activities include the work carried out by cancer registries to monitor the incidence of cancer and measure mortality and survival rates, and communicable disease surveillance undertaken by the Public Health Laboratory Service and other contributing agencies. I am sure that hon. Members will agree that those activities are very important.

Dr. Fox: I am sure that there will be no difference in the Committee about the need to ensure that cancer registries can continue to operate. What are the Government's reasons for not making cancer a notifiable disease?

Ms Blears: I do not know what the specific requirements are for defining a notifiable disease in legislation. Diseases such as E. coli and CJD are not notifiable diseases as the law stands. I do not know whether it would be possible under current legislation for us to designate cancer as a notifiable disease. I do

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not have that information to hand, but will respond to the hon. Gentleman when I do.

Dr. Fox: I am glad to tell the Minister that that would be possible, as it is a notifiable disease in many other countries such as the United States, Canada and Australia. Why should we go down the route of cancer registries, rather than making the disease notifiable?

Ms Blears: A disease may be designated a notifiable disease for some purposes. The section 60 regime and the regulations provide an up-to-date framework in which all the work of cancer registries can be incorporated, not just the fact that the disease is notifiable. Their wider work includes developing counselling services, and not only considering incidence and surveillance, but developing health care services. The emphasis of that work is different from that on notifiable public health diseases where it is on finding out where the disease has occurred, and following it up. The work of cancer registries involves developing health care that works and that helps people to deal with the effects of cancer. The Government have taken a more creative and imaginative approach than would be served simply by using other legislation.

As I said, the regulations are in two parts. There is specific support for cancer and communicable disease. I am sure that all Members will agree that those are important activities. The Commons Select Committee on Science and Technology said about cancer research:

    "unless legislation is put in place swiftly, medical research will be irretrievably damaged."

Professor Mike Richards, the national cancer director, commented that:

    "the regulations relating to cancer registration are vital for the continuation of comprehensive cancer registration in this country . . . to monitor the impact of actions taken as a result of the NHS Cancer Plan."

Mr. Grieve: I assume that regulation 2 deals with cancer registries. Will the Minister explain paragraph (e):

    "the provision about individuals who have suffered from a particular disease or condition where—

    (i) that information supports of analysis of risk . . . and

    (ii) it is required"

not for treatment, but

    "for the counselling and support of a person who is concerned about the risk of developing that disease or condition."

Considering the Minister's principal point, will she explain how that paragraph fits in with maintaining a registry to provide a database, as opposed to using information about A for the benefit of B, which is directly related not to treatment, but to providing information?

Ms Blears: The hon. Gentleman raises a point similar to the previous one. The regulations provide a wider range of support for activities that do not concern just the surveillance of incidence and prevalence, but developing health care facilities. The

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issue relates to information concerning, for example, hereditary risks of developing cancer and ensuring that facilities can be put in place for counselling and supporting people who may have such an increased hereditary risk. It is crucial to be able to make those familial links to ensure that those services are provided.

On communicable disease surveillance, the Public Health Laboratory Service's work to monitor infections, such as E.coli and new variant CJD, is clearly in the public interest. Lord Turnberg, chairman of the PHLS, has said that the regulations will

    "continue to protect the population from infection."

Professor Sian Griffiths, president of the Faculty of Public Health Medicine, has said:

    "there is a clear public health justification for the practice of effective communicable disease surveillance."

I am sure that hon. Members will have received a copy of the Medical Research Council's letter, which highlighted issues such as examining the potential health risks from mobile phone technology, the possibility of long-term neuropsychiatric illness from organophosphate sheep dips, the safety of depleted uranium and the epidemiological success story of sudden infant cot death. The MRC highlighted those subjects as important in public health matters.

Dr. Fox: Does the Minister believe that if a patient thinks that the fact that they have had an HIV test might be passed on to someone, they will be more or less likely to come forward for such testing?

Ms Blears: It is incumbent on us all, in the health service and in whatever way we can, to try to be open with people about the use to which the information is put. That should be the case for all patients, irrespective of their condition, and we must make a better attempt to explain to people the public health benefits and the action that may be taken to benefit not only them but future generations. There is a balance between private and public interests, and the regulations attempt to get that balance right. I can understand the concerns about personal information, and health professionals need to be able to talk them through.

As I said at the outset, the regulations are designed to allow people to use information for specific purposes, such as cancer registries and communicable diseases, not to force people to provide information. The regulations are designed to ensure that there is legal cover and support for work when something is going on, while driving the system towards further anonymisation. Health professionals have a duty to ensure that they talk to patients about the use to which the information might be put, for example in cancer registries.

Dr. Fox: That may be the Minister's intention, but that is not what the regulations will do. Perhaps one

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of the greatest worries that patients will have is not that information about their behaviour or lifestyles might be imparted, but that genetic information might be available. Will she assure the Committee that genetic information will not be drawn upon and that it will remain totally confidential?

Ms Blears: I can give the hon. Gentleman reassurance, both generally and specifically. First, if patients object to their information being passed on, they can tell their doctor, who would not then be compelled to provide that information. Secondly, the Human Genetics Commission is meeting at the moment with a view to publishing a report with detailed recommendations on the issues. There are genuine, serious and understandable concerns about how the information might be used. In the context of these regulations, which deal with specific use of information for cancer registry and notifiable diseases, I cannot pre-empt the report of the Human Genetics Commission, but I am assured that it will be published, with recommendations, in the next few weeks. I hope that that will reassure the hon. Gentleman.

Mr. David Kidney (Stafford): My hon. Friend says that if a person withholds consent, the information will not be processed. I have studied the regulations, but I cannot find where that is stated. Will she explain how issues of consent can stop the information being passed on?

Ms Blears: There is a second process within the legal framework. Only if a requirement were introduced for the information to be released would the right to object be removed. The regulations are couched in the form, "If the Secretary of State were to make a requirement", so another stage has to be gone through before that position could arise. As I outlined at the start, in an extreme case where an epidemic of a non-notifiable disease could break out, the Secretary of State might, after considering all the evidence, take that decision. Only then would the right to object be removed. Until the Secretary of State reaches that second stage, the right to object remains within the legal framework and cannot be removed. I repeat that the important right to object to the disclosure of information will be removed by the Secretary of State only when he is persuaded, on advice, that the position warrants it.

 
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Prepared Wednesday 15 May 2002