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House of Lords

Tuesday, 6 July 2004.

The House met at half-past two of the clock: The LORD CHANCELLOR on the Woolsack.

Prayers—Read by the Lord Bishop of Coventry.

Patient Information Advisory Group

Baroness Finlay of Llandaff asked Her Majesty's Government:

The Parliamentary Under-Secretary of State, Department of Health (Lord Warner): My Lords, the national programme for NHS IT is currently developing improved anonymisation services to support activities that rely on NHS patient information. We expect that by 2007 the Patient Information Advisory Group will have evaluated these services, advised the Government on where anonymised information must be used as an alternative to disclosing confidential patient information without consent, and indicated whether there is a need for continuing legislative support for key work. Consideration can then be given to whether there is a continuing need for an advisory group.

Baroness Finlay of Llandaff: My Lords, I am grateful to the Minister for his reply. I should like to quote him back to himself. He said in a debate on 7 January,

He shared the scepticism of the noble Lord, Lord Turnberg, about whether that was achievable. I have to add my scepticism to theirs.

We have the most comprehensive cancer registry in the world, from which there has never been a breach of confidentiality. Would it not be safer to continue registration at present, ensuring through public information that everyone understands why such data are so crucial to ensure equity of treatment, detection of carcinogens and so that research findings can be rolled out to the public?

Lord Warner: My Lords, I pay tribute to the work of the cancer registries. I, as always, retain a healthy scepticism about all sorts of things, but in this particular instance, the Government are ensuring that nothing is changed from the present arrangements
 
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until PIAG has seen that the new secondary uses services that will be introduced under the new IT programmes are working satisfactorily.

Baroness Hayman: My Lords, is my noble friend aware how much the Government's change of view on some issues in the Human Tissue Bill has been welcomed by the medical research community? I remind the House of my interest, as chairman of Cancer Research UK. On informed consent and the transfer of information, will my noble friend do all he can to make sure that the Government take an equally practical and pragmatic approach in order to safeguard life-saving research?

Lord Warner: My Lords, as I was trying to indicate, the Government will, through their new IT programme, be setting up a secondary uses service, which is for the people who do not deal with direct patient care, such as researchers and public health communities. They will have that service, which will protect their research interest. Taking a belt and braces approach, we are keeping the PIAG system in place to ensure that everything is satisfactory and the best interests of researchers and patients are served.

Lord Clement-Jones: My Lords, the setting up of PIAG—for which my noble friend Lady Northover must take a great deal of credit—was a very important step in allowing the transfer of information to cancer disease registries, as the noble Baroness, Lady Finlay of Llandaff, pointed out. When we debated this in January, the Minister said that decisions were imminent, yet we still seem very slow in giving certainty to the disease registries. Has the Minister considered making cancer notifiable so that the information can be passed without recourse to PIAG?

Lord Warner: My Lords, we keep those issues under review. However, I thought that I was giving certainty in my Answer. I said that by 2007 PIAG would be able to evaluate the new services and see whether changes are necessary.

Earl Howe: My Lords, is the Minister aware that there is quite a deal of concern in the medical community about the national patient record system and the effect on patient confidentiality that it may have? Can he assure me that this is being looked at closely and that the department is taking it seriously?

Lord Warner: My Lords, Professor Aidan Halligan, one of the deputy chief medical officers in the department, has been given the job of making sure that the needs and concerns of clinicians are fully met as the NHS IT national programme is rolled out.

Baroness Masham of Ilton: My Lords, will this information be held centrally, because there are many health bodies, and nobody quite knows what each does? Will the information be available to universities and those people who want it for research?

Lord Warner: My Lords, the NHS programme for IT will create a new national patient record system in
 
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England. There will be a range of abilities to access it, based on people's need to know and the confidentiality and security arrangements that are appropriate. Researchers in universities and elsewhere who are involved in this area will be regarded as secondary users and will have the services that I have described.

Eating Disorders

Baroness Sharples: My Lords, I beg leave to ask the Question standing in my name on the Order Paper. In doing so, I should declare that over 30 years ago, I was diagnosed with anorexia.

The Question was as follows:

To ask Her Majesty's Government what progress has been made in implementing the National Institute for Clinical Excellence guidelines for the treatment of eating disorders, published in January.

Lord Warner: My Lords, implementation of the National Institute for Clinical Excellence guidelines on eating disorders is a matter for primary care trusts, with strategic health authorities and the Healthcare Commission maintaining an oversight role.

Baroness Sharples: My Lords, I thank the Minister for that reply. Is he aware that more than 1.1 million people, most of them young people, are suffering from those illnesses? Their access to treatment is, at best, patchy and, in many places, inadequate. Surely GPs and practice nurses should receive advice on how they can recognise those illnesses so that they can prevent possible death.

Lord Warner: My Lords, services for people with eating disorders are available throughout the country, in both primary and secondary care, but we recognise that expertise and services are unequally distributed around the country. That is precisely why the National Institute for Clinical Excellence guidelines were published in January as part of a programme to improve services.

Lord Clement-Jones: My Lords, one of the problems with eating disorders and their treatment is, to a large extent, the lack of a clinical evidence base on the most effective treatments. There has been some concern about the impact of regulations made under EU Clinical Trials Directive on the ability of those trials to be carried out. What can the Minister say on that subject?

Lord Warner: My Lords, we have been over the ground of the EU Clinical Trials Directive many times and no doubt we will go over it again. The Government's position is clear. We have implemented the EU directive. I am not aware that it is going to have any adverse effect on research in that particular area.

Lord Walton of Detchant: My Lords, does the Minister agree that the recommendations and
 
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guidelines from the National Institute for Clinical Excellence in this field are extremely welcome? Nevertheless, does he accept that many patients who suffer from eating disorders are very difficult indeed for doctors to identify because they often have a remarkable expertise in concealing the nature of their condition from their doctors, their parents and others who care for them? Does he feel that the guidance from the national institute is good enough to help doctors to identify patients with those conditions?

Lord Warner: My Lords, that guidance was the result of a great deal of discussion and consultation with a wide range of interests. It recommends the best practice that is available in this country.

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