Previous Section Back to Table of Contents Lords Hansard Home Page


Earl Howe: It is not much of a dilution of CHAI's investigative function to say that someone whose property has been taken away should be able to ask CHAI why it has held on to it for an unconscionable length of time.

The Minister slightly over-eggs his case. He says that judicial review or redress by the ombudsman are remedies available to those affected. I simply point out, as I have before, that judicial review is a terribly heavy-handed and expensive procedure. It is also not necessarily very speedy. One could say the same of redress by the ombudsman.

The proposal I make in the amendment is fairly simple, and does not ask an awful lot. It certainly would not interfere with the rights granted to CHAI and CSCI under these clauses. I am disappointed that the Minister was not more receptive to my proposals, but I do not propose to press the matter now. I beg leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Clause 65 agreed to.

Clause 66 [Power to require documents and information etc]:

Earl Howe moved Amendment No. 323:


The noble Earl said: In moving the amendment, I shall speak to Amendments Nos. 324, 358ZB and 358ZC.

The amendments deal with some extremely serious concerns about patient confidentiality. I am experiencing a sense of de ja vu in raising the topic, as my worries are similar to those I raised four years ago in our debates on the health Bill, in relation to the Commission for Health Improvement. Several of us argued, successfully, that the proposed powers for CHAI to access patient data were excessive, and amendments were made that considerably softened the original proposals. I hope that something similar can be agreed on this occasion.

The Bill contains what are, by any standards, wide-ranging powers for new CHAI to access patient records wherever,


    "CHAI considers it necessary or expedient".

Nowhere at all is the patient's right to confidentiality even alluded to, nor is any mention made of involving patients in decisions about the use of their personal data.

The GMC has those principles as a central plank of its guidance on confidentiality. Nominally, at least, the Department of Health has also subscribed to them in its draft code of practice. So why these unqualified

20 Oct 2003 : Column 1331

provisions? We all understand about the work that CHAI will do. Some of its investigatory work will be retrospective in nature. Quality assessments involve similar procedures. In those circumstances, obtaining a patient's consent to accessing his records may be a cumbersome and sometimes even impossible task. Nevertheless, there is a very strong argument for insisting that CHAI should use anonymised or aggregated data whenever they will serve its purpose.

If one is trying to compile an assessment of clinical or financial performance, information about individual patients is seldom needed. Anonymised data are sufficient and will become much easier to generate over time, as more records are held electronically. In circumstances in which identifiable records are needed—and there will be some—the answer ought to be that the patient's consent should be obtained. That could be done by way of a suitably worded authority when the patient is being treated in the hospital, to be put by in case of need later. If that cannot be done, personal records should be accessed only for overriding public interest reasons.

The Health and Social Care Act 2001 established the Patient Information Advisory Group as a mechanism for considering circumstances where the public interest is not clear cut and it is not practical to anonymise data or seek patient consent. We would feel a lot easier if the powers of CHAI to access named data without consent were made subject to that legislation. I beg to move.

Lord Clement-Jones: We on these Benches very much welcome a debate on the amendments. However, without recent developments, we would have had more sympathy with them. At one stage, it looked as if the GMC and new CHAI were lining up for a potential clash of the titans, although I do not know whether that is the right way in which to describe Sir Graham Catto and Sir Ian Kennedy—but it looked very much that way.

As the noble Earl, Lord Howe, said, we have had many previous debates on this area—those on the Health and Social Care Bill being one instance, and the previous CHAI debate being another. We on these Benches have been quite consistent. We are not over-ideological about prohibiting use of non-anomymised personal records. The circumstances may differ in which those records can be used, but the essence of the question is, at the end of the day, what is right for patient welfare. Authorities, regulatory or otherwise, need good justification for such access and there need to be proper controls. We were instrumental in agreeing to the new Patient Information Advisory Group set out in Section 61 of the 2001 Act.

In this Bill, there is a difficult balance to maintain. The matter needs to be considered against the backdrop of the kind of powers held by other regulators, such as the Audit Commission, in similar circumstances. I believe that times have changed and that untrammelled right of access to non-anonymised personal records would be wrong in the circumstances that we are discussing. However, CHAI believes that when it is investigating cases such as abuse and serious

20 Oct 2003 : Column 1332

service failures it needs that kind of access. On the other hand, the GMC has been vigilant in drawing up its code of confidentiality. Our view on these Benches might have been different if no agreement had been reached between the two bodies. However, it appears to have been reached—I believe that the Nursing and Midwifery Council and the consumers' council have been involved in this—in terms of agreeing that a code of practice should be drawn up which would specify the situations in which CHAI would have access to data relating to individual identifiable patients. The instances in which authorisation would be sought and granted would be specified.

The situation begs a number of questions. These Benches have been briefed by the GMC, as I believe have a number of other noble Lords. A number of issues have been raised. I understand that there is still water to flow under the bridge and clearly we are not there yet. However, it would be extremely useful if the Minister would indicate the kind of circumstances where access would be granted to individual identifiable patient records, and when access would be sought and the mechanisms for scrutinising, authorising and monitoring those requests. The matter is rather more important than simply waiting for a set of regulations to come down the track after the Bill has left this House.

I do not go so far as the noble Earl, Lord Howe, in saying that the Patient Information Advisory Group should be involved, but I believe that there could well be a case for the code of practice to be enshrined in legislation, or for it to become a precondition in this regard. I hope that the Minister will address that matter in his response. This is a serious matter. It is an area where conflicting principles apply. We believe that the two bodies concerned are in the process of achieving a balance but that rather more specificity is required.

7 p.m.

Baroness Cumberlege: I also wish to address the amendment. I have great sympathy with my noble friend's concerns. I wish to comment briefly as I know that time is moving on. I made my maiden speech on patient records. One of the indicators of success of the change in childbirth policy which I pioneered was that pregnant women should hold their own notes. As I have three children and a very diligent GP, my health records are voluminous. When my GP retired, a new GP entered the practice and looked at my notes. He said, "I am very sorry, Julia, I cannot read a word of them". Therefore, my records are completely confidential—that gives me great heart—but I have to say that they are confidential and useless.

The clauses that we are discussing are very worrying. As the noble Lord, Lord Clement-Jones, said, we had long debates on these issues during the passage of the Health and Social Care Bill. The Minister was certainly not a Minister at that time and perhaps did not take part in the debates on that Bill. During the passage of that Bill we had measured, sincere and very passionate debates at every stage. Some noble Lords, myself included, were very nervous that the proposals

20 Oct 2003 : Column 1333

would assault the principle of patient confidentiality. Today we face the danger of another move to erode that principle. In no way do I want to insinuate that the motives of those concerned are sinister but I believe that there are serious dangers here which need to be addressed.

I do not want to go over all the arguments that we had previously as I am sure that there will be opportunities to do so later in the passage of this Bill. However, we know that effective medicine depends very much on trust—trust between doctor and patient, between nurse and patient, between healthcare worker and patient but, above all, the trust that the patient has in the NHS; the NHS as an organisation, its systems and its ethics.

Patients reveal the most intimate aspects of their lives, especially when they are at their most vulnerable. It is essential that health professionals have a great deal of knowledge about patients if appropriate care is to be provided but it is understood that that information is confidential and will not be bandied about or disclosed without the patient's consent. One has only to pick up a telephone and try to book something as innocuous as a holiday to be told often by the relevant commercial company, "I warn you that what you say may be disclosed for training purposes". Many such organisations are punctilious in that regard and yet here we are asking people to reveal the most intimate information to health professionals for it to be used by CHAI. CHAI is a body of huge integrity. We have great faith in its new chair and its commissioners but it is an independent body. We do not know what it will be like in time to come. Earlier the Minister described CHAI as the pre-eminent, independent NHS body. It is a very powerful body.

The noble Lord, Lord Clement-Jones, said that there has been much discussion on the matter which I very much appreciate. I am pleased that agreement has been reached but, as I understand it, it is proposed that the use of private patient records should be authorised by a small group of two or three CHAI commissioners. I do not think that is good enough. We ought not to allow CHAI, which wants this information, to be the judge and jury in its own cause. In ordinary law we do not accept that as a good principle. I do not accept what the noble Lord, Lord Clement-Jones, said; that is, that we should not use the organisation that was set up through pressure of your Lordships during the passage of the 2001 Bill. We were very careful to ensure that the Patient Information Advisory Group was well chaired. We chose an extremely eminent person to chair the group, Professor Joan Higgins. Other members of the group were Sir Denis Pereira Gray, who was an adviser to the department, and Sir Cyril Chantler—people of enormous integrity, eminence and common sense.


Next Section Back to Table of Contents Lords Hansard Home Page