Patient Information Advisory Group (Hansard, 6 July 2004)

§ Baroness Finlay of Llandaff
asked Her Majesty's Government:
What is the likely duration of the Patient Information Advisory Group; and what plans are in place to enable the transfer of information about National Health Service patients in the absence of informed consent when the group ceases to exist.

§ 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, it remains to be seen whether the wonders of IT will ultimately remove the need for identifiable data for the purposes of epidemiology.[Official Report, 7/1/04; cols. 209ߝ10.] 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 656 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 657 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.