§ 7.40 p.m.
§ Lord Walton of Detchant
My Lords, I beg to move that this Bill be now read a second time.
The principle of confidentiality is at the very core of the doctor/patient relationship and it is one wholly accepted by other healthcare professionals. However, no privilege attaches in law to communications between doctors and patients in the same way as communications between solicitors and clients are privileged and legally protected.
In various foreign legal codes, such as the French under the Code Napoléon, medical confidentiality is virtually absolute and must not be breached. That has never been the case in the United Kingdom and the professional regulatory authorities—such as the General Medical Council in the case of registered medical practitioners and 918 the United Kingdom Central Council in the case of nurses, midwives and health visitors—regularly advise those subject to their jurisdiction upon the principles of confidentiality which they should follow.
From time to time, those principles are modified in accordance with changing circumstances. Thus, it has always been accepted that confidentiality may be breached with the express consent of a competent patient and doctors, nurses and other professionals may be ordered by a judge in a court of law to disclose information in the public interest. During my period of service as President of the General Medical Council from 1982 to 1989 the council was greatly exercised over issues relating to confidentiality involving minors when dealing with such issues as contraception and abortion and much detailed advice was offered to the profession on that issue. Problems subsequently emerged relating to those individuals infected with the human immunodeficiency virus (HIV) and yet again detailed advice was given.
We also embarked upon extensive discussions with the Home Office when the Police and Criminal Evidence Bill, subsequently an Act, was under discussion. It was eventually agreed that it would be proper for doctors sometimes to breach medical confidentiality when dealing with the investigation of a grave or very serious crime such as a terrorist act.
Careful consideration was also given to the circumstances in which it might be appropriate to notify the licensing authority that an individual suffering from epileptic fits was continuing to drive a motor vehicle despite being advised not to do so. Thus, from time to time professional regulatory authorities have felt it right in the interest of the public and patients alike to modify the advice given to their respective professions by defining certain exclusions to the rule of confidentiality. There are, of course, some others apart from those that I have mentioned.
When I retired from the presidency of the GMC, in 1989, I was delighted when Sir Robert Kilpatrick, a distinguished clinical pharmacologist and dean of the medical school in Leicester, was elected by the council to succeed me. It was, therefore, a particular pleasure to welcome him into your Lordships' House and to learn that he has decided to deliver his maiden speech later in this debate. I am sure that the wise advice, counsel and comments of my noble friend will be listened to with keen attention on this and many subsequent occasions. I look forward very much to hearing what he has to say.
In summary, although certain specific exclusions have been defined, it is the duty of doctors, nurses and those working in other related professions to keep confidential the personal health information which they acquire in the course of their professional practice. It is, of course, fully accepted that disclosure to another healthcare professional is wholly appropriate when the individual in question is involved in the care of the patient. But any doctor or other member of a healthcare profession disclosing information without the consent of the individual concerned, and in circumstances not subject to defined exclusions, may be brought before the conduct procedures of the relevant regulatory body and may be subject to disciplinary sanctions.
919 However, no such formal sanctions apply to lay members health authorities or lay employees of the National Health Service, or to others working in the private sector such as secretaries of doctors. Ministers have regularly stated that all NHS bodies and staff have a legal duty to keep patient information confidential. They have gone further by saying, for example, in discussion with the BMA that everyone working in the NHS is under a common-law duty of confidence to patients. As recently as 7th March the Department of Health produced guidance in a substantial booklet entitled The Protection and Use of Patient Information, confirming that there is indeed a common-law duty except in relation to individuals with a sexually transmitted disease and AIDS where breach of confidentiality can be a criminal offence under statute.
Yet there is still no overarching statute relating to the disclosure of personal health information. To the best of my knowledge, no lay employee of a health authority or of a consultant or other doctor working in private practice has ever been prosecuted for a breach of confidentiality. To put it crudely, therefore, there is no existing statutory restraint to prevent such an individual from selling to the media confidential information about the health of a prominent public figure. No formal sanction can at present be imposed upon such an individual, except that of dismissal.
The purpose of the Bill, to which I trust your Lordships will give a Second Reading tonight, is to make such a disclosure a criminal offence subject to a fine if the offence is found proved. It is also important to recognise that the common-law duty referred to by the Department of Health and the detailed guidance now given in its comprehensive document cannot apply to the increasingly large private sector of health care. It is the intention of the Bill to embrace all areas of medical practice.
Your Lordships will be aware of recent reports in the public press and media of the unsavoury and disturbing fact that, for a modest sum, private inquiry agents have been able to obtain access to the confidential medical records of several public figures including, to his astonishment, the Chairman of Council of the British Medical Association.
A number of statutes are relevant. Under the Data Protection Act 1984 individuals may have access to their own health records when held on computer. Under the Access to Health Records Act 1990 such individuals may also have right of access to information about themselves recorded in manually held records. The Access to Medical Reports Act 1988 gives individuals the right of access to medical reports written about them for insurance or employment purposes by doctors responsible for their treatment. Indeed, it gives them the right to see such reports before they are sent.
Those statutes do not, however, include any clauses specifically relating to breaches of confidentiality, although that issue is dealt with in legislation on sexually transmitted disease, human embryology and fertilisation and abortion. Under the Criminal Justice and Public Order Act it is illegal to procure or sell computerised data, but manual data are not protected 920 under the Act and it does not deal specifically with individuals disclosing information. The whole purpose of the Bill is to fill an important gap in existing legislation.
It is relevant to mention something of the history of the Bill. For many years a statute embodying these provisions was under discussion between officers of the Department of Health and a large number of professional bodies. For some reason, about three years ago the department withdrew from those discussions and I am unaware of the circumstances leading to that withdrawal. However, the Bill now before your Lordships has been sponsored by an inter-professional working group, including representatives of the BMA, the medical Royal Colleges and their faculties, the Royal College of Nursing, the Royal College of Midwives, the Council for the Professions Supplementary to Medicine, the Office of the Data Protection Registrar, and the Association of Community Health Councils. Many more bodies have expressed their support including, for example, the Patients Association. It is also my understanding that the Bill is supported in principle by the Law Society while the issue has been raised recently by the tabling of an Early Day Motion in another place.
The Bill is self-explanatory. It aims to ensure that personal health information is equally well protected when handled by non-health professionals both within and outside the NHS and it relates to both computerised and manual data. It mirrors the codes of practice set out by the professional regulatory authorities of the health professions and complements the Data Protection Act 1984. Its provisions are totally in line with the guidance now published by the Department of Health. It also addresses the requirements of the European data protection directive in ensuring that safeguards for monitoring non-consensual disclosures are incorporated into statute.
The Bill relates only to England and Wales and is divided into 15 clauses. Clause I deals with the circumstances in which a person or body may collect personal health information. Clause 2 outlines the duty of health professionals and health service bodies to preserve confidentiality.
The core of the Bill is contained in Clauses 3 and 4. Clause 3 prohibits the use of personal health information for purposes other than that for which it was originally given, with specific exceptions. Under that provision, information may be disclosed in cases where there is a pre-existing statutory requirement to report it; for example, to avert a threat to public health or safety, in response to a court order, or, as I have already said, for the prevention or investigation of a serious crime; and general information without identifying the individual concerned—that is, suitably anonymised—may be disclosed with safeguards for audit or research purposes. The remaining clauses go into some detail about the means by which that information and confidentiality can be protected.
The importance of the Bill has been heightened to some extent by the proposal that an NHS-wide computerised network of information should be 921 established. I believe that we should welcome improved communications within the NHS and the valid transfer of appropriate clinical information. I must acknowledge that a carefully designed system with appropriate safeguards could well be of great benefit to patient care as well as to teaching and research. However, there is a serious risk that such a network might be introduced without adequate protection being put into place to maintain the confidentiality of personal health records. I am assured that it is possible to install safeguards within the network—technically known as "filewalls"—which prevent access by individuals who do not have an appropriate password to enter the system. Moreover, encryption of particularly sensitive information under programmes such as that entitled PGP—pretty good privacy—may also be used. But there is little doubt that the ingenuity of computer hackers would, if they were so determined, ultimately circumvent such barriers; and, of course, the risk of disclosure of such information in manual records is likely to arise even more frequently.
Therefore, I am happy to commend this Bill to your Lordships' House. I believe that it is a sensible, timely and even overdue measure. Should your Lordships decide to give the Bill a Second Reading there are undoubtedly adjustments which will require to be made in Committee. For example, I have learnt that the subsections under Clause 8 entitled "Duties of health service bodies" do not cover adequately the lay employees of doctors and others working in the private sector. Clearly, that is something which must be made watertight.
It has also been brought to my attention that Clause 11(1)may be interpreted as giving the Secretary of State for Health a Henry VIII power, which I have learnt is anathema to your Lordships' House. A minor amendment to the clause making it clear that the matter could be dealt with by regulations rather than by order would, I am assured by your Lordships' Delegated Powers Scrutiny Committee, deal effectively with that matter.
I am confident that this Bill will receive wide support, not just within the relevant professions but by the public at large. The Minister may say that the Department of Health feels that the issues under consideration can be dealt with effectively by the useful and detailed guidance now issued by the Department of Health. The essential difference between us is that the Minister is likely to claim that guidance and consequential protection of confidentiality by common law may be sufficient. After the most earnest consideration, my belief is that that would simply not be sufficient and that, even in the NHS, improper disclosure not at present defined by an over-arching statute should be made a criminal offence. But, above all, the Department of Health guidance leaves totally unaffected the growing private sector where I and many others feel that the risk of major breaches of confidentiality is even more likely to arise. I beg to move.
Moved, That the Bill be now read a second time.— (Lord Walton of Detchant.)
§ 7.56 p.m.
§ Lord Kilpatrick of Kincraig
My Lords, a common thread in all of the maiden speeches given in this House that I have read is an acknowledgement of the friendliness and warm support that individuals in the House give to newcomers. I sincerely express the same appreciation. I must confess also to a quite marked perturbation. I have just taken my heart rate and it is now faster than it has ever been when I have had occasion to speak publicly. That is not very good for an ageing heart.
My noble friend Lord Walton has, as usual, been extremely comprehensive; and I am used to that. The General Medical Council gave a great deal of attention to the seriousness of breaches of confidentiality of medical records during the time that my noble friend was president and again in a major statement in 1994 when I was in that office. I believe that this Bill really began its drafting stage at or around that time.
The problem has burgeoned immensely. To a degree that is related to the computerisation which now exists in virtually the whole of the hospital sector and the general practitioner sector throughout the United Kingdom. Abuse is certainly occurring more frequently. I should like to communicate how grave a problem that is in relation to the standard of care which patients receive at present.
Bernard Shaw described the doctor's dilemma. Unusually for him, he was guilty of miosis. There are many dilemmas which face health professionals in everyday practice. I should like to discuss two of them. The first is related to the fact that patients trust doctors, especially those whom they come to know very well because they see them repeatedly. They often communicate information to them which is so sensitive and so potentially destructive that the consulting room is akin to a confessional. The first dilemma for a doctor is, "Shall I make a note?".
I should like to give your Lordships three illustrations of that dilemma based on my own experience. The first concerns a lady who was discussing with me the possibility that her son might have a heritable defect which could appear in later life. After several questions from me concerning her husband she said, "Doctor, I have never told anyone this, but my husband is not the father of my son". I would not make a note of such information. The only reason for making a note to breach in effect a very sensitive piece of confidence is that it may be of help in that patient's present or future care. That is the dilemma; that is the balance one has to strike.
My second illustration also, I am afraid, involves a lady. However, that is just coincidence. In fact, she falls into a small group of patients whom we all see and who are extraordinarily loquacious: they go on, and on and on. They have complaints referable to every anatomical part and to every physiological system. I have a device that I use in such cases: it was taught to me by a very distinguished teacher of mine. One says, "Just stop. Just 923 think about this: when were you last perfectly well?" After a long pause, the lady said, "When my mother was six months pregnant with me she was kicked by a horse, and I have never been well". That may seem to be rather humorous, but it is also very important to put such information in the patient's medical record because it could be of great consequence in relation to the future care of that lady by other doctors.
I turn now to the most striking example I have about doctors. I should say that there are many of them who become accustomed to writing everything in the notes. This example concerns Dr. Nigel Cox who appeared in front of the Professional Conduct Committee when I was in the chair. He had written into the notes of his dying patient that he had given her a lethal injection of potassium chloride. That information was breached. He faced a charge of attempted murder and was convicted.
I should like to stress that my greatest concern about the problem of confidentiality of records and of information that patients give to doctors, nurses or other health professionals is that, if the abuse continues to increase and doctors become more and more aware that such information may be breached, they will be all the more likely not to put anything in the notes. In my view, that absence would impair the high standards of care that citizens in this country are accustomed to receiving.
The second dilemma—and, again, this was covered to a considerable degree by my noble friend Lord Walton—is when a health professional feels that he should breach confidence. There are clear guidelines given by the regulatory bodies on the balance required. By and large one should always maintain confidence, but there are occasions when one should breach it. It is not difficult when there is statutory provision for it and that is often the case. The most striking example is notifiable disease; that is, when there is a particular infectious condition whereby the public interest demands that notification be made and it is made, with or without the patient's consent, because the public interest is such that members of the community may be infected. I have in mind something like tuberculosis. However, there are many instances where it is much more difficult to make a decision.
I had another patient, a middle-aged man, whom I had seen on many occasions. I became increasingly suspicious that he may have been or was a paedophiliac. That is something that I would certainly breach. In my experience, the most difficult situation of all is where information is given to the doctor by children. The most extreme example I have experienced related to a 12 year-old girl who told me that she wished to give me information but insisted that I give her an absolute guarantee that I would not divulge it to anyone. As I said, that is a most difficult situation because the doctor must not give an absolute guarantee, especially before he or she knows the nature of the information. One has to try to persuade a child—and this one was 12 years-old—to the point where one would be able to weigh in the balance the information that the child would give in case it might imperil other individuals or, for that matter, the child.
924 I hope that I have convinced your Lordships of the seriousness of the problem regarding the information that patients give to their doctors. Each patient believes that the history they give and the physical examination that the doctor makes will be totally confidential. Very often they believe that the information will only be seen by that particular doctor. All doctors, like myself, take pains to tell patients that the information is going into the notes because it may be of value to other doctors who will see them later. That is the essence of the matter. The problem is that other individuals who see a written record may not have sufficient self-regulation not to breach confidence. I believe that this Bill will add a further deterrent for individuals not to do so.
I should like to conclude by saying that I believe this is a matter of great gravity. I return to my previous concern: if the abuse of confidentiality continues to grow, I believe that doctors will make scantier and scantier notes. I have one further example in that respect. A previous colleague of mine was a surgeon. He made very bare notes—although, I should say that that is not unusual for surgeons—but he would then write a detailed letter about each patient to his or her GP. Therefore, the only individuals who received that information were the surgeon and the general practitioner. I believe that that was carrying it to an extreme degree. It meant that no one in the hospital service, other than the surgeon, saw a record of what had gone on.
I believe that it is quite likely that we will see a reduction in notes such that it may impair the very high standards of care which are consequent upon having detailed notes. I hope that we can return to the position whereby there is total protection of the privacy of the living and the dead.
§ 8.10 p.m.
§ Lord Winston
My Lords, I rise, as the third part of this medical sandwich; I might add that I am the smallest part. I do so having listened carefully to the comments of the noble Lord, Lord Kilpatrick, on making a maiden speech. I must tell him that the myocardium, the heart muscle, requires a lot of training. I still find that my pulse rate rises considerably when I rise to speak in this Chamber. That may not be an entirely bad thing either. It is a real pleasure to thank the noble Lord, Lord Kilpatrick, for his remarkably important speech. We are most fortunate to hear his contribution on this matter because it is an area of medicine which he understands as well as anyone, having been associated with the General Medical Council for such a long time and having been its president for the past six years.
When I heard that yet a third ex-president of the General Medical Council was to join your Lordships' House I felt a slight frisson of horror because I realised that I would have to watch my personal conduct rather more carefully in future. Nevertheless, it is a great happiness to me and a privilege to welcome the noble Lord. It is a rare privilege to be able to welcome anyone who is so distinguished in medicine. The noble Lord has held three chairs and has been a Dean of two different distinguished medical faculties, one in Sheffield and 925 subsequently in Leicester. Those are both internationally recognised medical schools of the highest standard. The noble Lord has received many academic honours and is widely respected, particularly as an absolutely outstanding administrator. Like the noble Lord, Lord Walton, we all greatly look forward to hearing many contributions from the noble Lord, Lord Kilpatrick, in this Chamber.
The noble Lord's point is well taken. Indeed, one is regularly put in the position of being taken into a patient's confidence. In my field of medicine which involves the family and sexual matters that happens literally every day. I declare my interest as a consultant obstetrician and gynaecologist. Patients frequently tell me in private—perhaps when the husband has left the room—that they have not mentioned a previous pregnancy which ended in a termination. That is important medical information which the doctor has to recognise in his overall assessment of what might be wrong with that patient and also in his assessment of how he might manage that patient not only in terms of physical management but also as regards psychological management. To risk not recording that information because the records might be open to unreasonable scrutiny is a matter of serious concern to any responsible doctor.
There is no doubt in my mind that a Bill of this kind is needed. This is an important matter. I am not entirely sure that this is absolutely the right Bill at present, but I have no doubt that it can be honed and fine-tuned, like all legislation in your Lordships' House, as it passes through its various stages. I am sure there must be unanimity among us all about the basic premise of this Bill, which is that people who seek medical help should have absolute privacy as regards their medical condition. That should not be breached except under the most extraordinary circumstances, which are already recorded in this Bill. We would expect that to be the case. That privacy should cover not only a patient's medical condition but should also extend to a patient's treatment and any social circumstances which a patient may need to divulge to his medical practitioner in the course of treatment. The noble Lord, Lord Walton, who I think is technically my colleague rather than my friend, at least in this House, is to be congratulated on bringing this matter to the attention of Parliament.
One of the reasons I think this legislation is of growing importance is the expansion of information technology. In large hospitals all sorts of personnel have wide access to hospital computers. My own hospital, for example, was one of the first hospitals to be computerised, and access to those computers is in some ways a matter of considerable concern because managers and non-medical staff who have absolutely no direct responsibility for patients have access to patients' records. There is no doubt that from time to time there has been evidence that the wrong sort of information has leaked out, and that has damaged a patient or her care, and has on occasion got into the hands of the press. I shall return to that issue in a moment.
926 Quite clearly there is a growing urgency to protect patient confidentiality. The problem that I see at the moment is how all this might be regulated. I do not wish to go into a long screed about this because I have no doubt that the Minister will want to address some of these points. However, the issue was well described in a recent article in the British Medical Journal. The article was written by Dr. Ross Anderson of the computer laboratory of Cambridge University. The article contains a précis of a document describing the findings of the British Medical Association, which is concerned about confidentiality.
Ross Anderson makes some excellent points in the article. He referred to a matter which occurs in my practice; namely, the problem about divulging information separately to one partner of a marriage. This may seem like a silly example but it is one I have a real understanding of because I experience it every day. It is common in an infertility clinic for the wife to take the responsibility of being infertile, even though it is her husband who suffers from a poor sperm count. Frequently the wife will ring the hospital to try to obtain information about the sperm count. The question is whether that information should be divulged to the wife before the husband is told of it. In my view, in general, that should not happen because if one tells the wife first one may cause her a greater burden than she realises at the time because she then has to present that information to her husband. There is also the difficult issue of confidentiality as between husband and wife and to what extent information should be divulged separately. The article to which I have referred describes some of those problems in more general terms. It is an important document, as is the wider pamphlet from which it is taken issued by the BMA. I recommend that pamphlet to your Lordships.
However, Ross Anderson's article presents us with a huge number of problems which one can begin to understand when one is struggling with computer records. It suggests nine principles to follow to maintain data security. He refers to access control. He states that each identifiable clinical record should be marked with an access control naming the people or groups of people who should have access to that record. That is perfectly reasonable, but the problem is that it is difficult to police. He further suggests:That when a clinical record is accessed there should be a record made of that opening".As far as I am aware, in practice that never happens with written records in hospitals. Therefore that process would set a new precedent as regards electronic material. Again, we would have to think about the implications of trying to implement such controls.
Ross Anderson also points out that one clinician who is in charge of a patient should have overall control of who has access to the records. There again one can see that that could constitute quite a problem as regards management. There are other issues about the persistence of records on a computer, how long they should remain in existence and as regards consent and notification and what patients should be told about who has access to their records and when.
927 Certainly at the moment there is no doubt that the implementation of this kind of legislation on electronic data gathering presents problems. I promise the Minister that I am not making a political point here, but so many hospital records, including my own, are poorly kept. They are often out of order and out of synchrony. They are frequently illegible and parts are often missing. Often much irrelevant information is included in the records. In most clinics it is the case that the records of some patients who attend the clinic cannot be found. In most hospitals in the National Health Service—the situation may be better in the private sector—there is a problem with the proper storage of and access to clinical records.
There is an irony about this. If one looks at the records at Hammersmith Hospital, for example, right across the front of the record is the large admonition "NOT TO BE HANDLED BY THE PATIENT". In my view, probably the only person who should handle those records is the patient. Of course, as we now know, patients should and do have access to their records. So we have a long way to go with regard to record-keeping.
As the noble Lord, Lord Walton, pointed out, there is an important precedent for this legislation. That is why this Bill may be a way forward. Your Lordships will recall that in 1990 Parliament passed the Human Fertilisation and Embryology Bill. That Bill included fairly restrictive provisions with regard to the confidentiality of information concerning patients going through in vitro fertilisation which made it an offence to divulge records except under very stringent circumstances. In fact, the circumstances were so stringent that the legislation had to come back to Parliament to be modified two years later. Even now there are some problems with the implementation of that legislation, as the Minister is no doubt aware. There are some anomalies with that legislation. For example, as I understand it, that is the only instance where records have to be kept for up to 50 years. That is strange when we do not do that for any other aspect of medical treatment.
There are also restrictions on who has access to computer records. Your Lordships may be aware that in the high technology branches of medicine like in vitro fertilisation the computer plays an important part in maintaining audit. One of the problems we have in our own clinic is that of ensuring that only the right people have access to records. However, we have a problem because, with the internal market—and again this is not a political point; it follows that there must be audit of some kind whether there is an internal market or any other form of management—because it is important that managers know which patients come through the system, how often, what treatment they are having and so on. That means that one has to manage how one gives access to such information. That is a real problem with legislation of this kind. No doubt we shall have to have a detailed discussion on that aspect.
928 Finally, I should like to deal with one point which is of particular interest to me. It is one which the noble Lord, Lord Walton, also touched upon; that is, the issue of the press interfering with patients. In my area of medicine, like so many areas, that has become an increasingly important problem. I should like to illustrate it by a story about some research we are working on in my unit at present.
My own unit at Hammersmith has been working in collaboration with the unit of Dr. Joy Delhanty of University College, London, on trying to detect the genes which might predispose to cancer in the human embryo. A number of families have a predisposition to breast cancer, bowel cancer or brain cancer. They carry these horrible genes. The families I am thinking of have lost five, six or in some cases seven members of the family before they reached the age of 40. It is a terrible sword of Damocles to have hanging over one's head. Women in those families who have married and become pregnant, knowing that they carry the genes, rather than opt for a termination of pregnancy, of which they do not approve or with which they have ethical problems, have opted for some form of embryo screening. Over the past few years Dr. Delhanty and my group have been trying very hard to screen embryos using genetic methods. We are on the point of making a small breakthrough in that area. There is no doubt that we shall be treating a number of patients this year.
Sadly, the first such patient was, as your Lordships can imagine, of intense interest to the press, first, because the case involved cancer; secondly, because it involved embryology, which for some reason invariably excites the press; and, thirdly, because of the issue of so-called designer babies. It has been a real problem. In spite of our greatest care with the patient, a journalist, who perhaps ought to remain nameless, dug out through, I believe, nefarious and dishonest practice, the name of the patient we were to treat. The patient came from a small town in the north of England and from a simple background. She had no idea what was about to land on her doorstep. She was anxious to have the treatment. Then suddenly she found that the national press, and particularly the local newspaper, had got hold of her name. She was put through the most appalling strain.
Under those circumstances, I have a real problem. I can deny that we are going to treat the patient. However, she will travel to London at some time, and that will become public knowledge to any inquisitive journalist. More importantly, she will undergo complex treatment with a considerable risk to her emotional status, not in private but in the glare of publicity.
This is an increasing problem in medical practice. That is not an isolated case. My problem is that I have no sanction whatever against those journalists. There is no way that I can dissuade them, because there is no law to stop them publishing those names. Afterwards the patient can perhaps sue if she feels that she has been damaged. However, the average patient, from a normal background, would not have the resources or the understanding to be able to do that.
929 For all kinds of reasons I feel that this legislation is worth serious consideration. However, it is very complex and it will need considerable adjustment to make sure, first, that it is workable and, secondly, that it is effective.
§ 8.25 p.m.
§ Lord Milverton
My Lords, it gives me great pleasure to rise to support the Bill that the noble Lord, Lord Walton, has introduced. It is rather frightening to follow three learned medical men. However, I hope that my few words will give not only my support but, because I am a priest, the support of a number of Church members.
I believe that the Bill is vital. I am sure that with the assistance of noble Lords who are present it can be improved and strengthened and many of the weaknesses removed. The Bill is essential for the sake of doctors and nurses.
There is a need to close the loopholes and prevent the leaks which occur, as the medical Peers said, whereby confidential material is leaked and misused. There is a need for a comprehensive measure to make the safety of this confidential material more certain in order that the confidence between doctors and patients and nurses and patients may be held in even greater security.
As has been said, the advances in scientific technology, the increase in data material which is available and digital scientific advances result in the possibility of this confidential material going far beyond the medical field. Therefore, one cannot emphasise too much that it is essential for the sake of doctors and nurses, who can be placed in very difficult situations.
We are very grateful to the noble Lord, Lord Kilpatrick, for his maiden speech. I appreciate the contribution of the noble Lord, Lord Winston. I remember that he kindly entertained me and informed me about embryology and in vitro fertilisation.
I hope that my noble friend the Minister will take the Bill on board so that we can do whatever is needed to improve it in order to secure the confidentiality of material so that patients, doctors and nurses may feel more secure about that than they do now. Others who have access to such material must realise that if they misbehave they will have to face the consequences. The media must also realise that they, too, will have to face the consequences. There are times when we must stand up to the media. We need to support the medical profession in that way. Therefore, I am very pleased that the noble Lord, Lord Walton, has brought this measure forward. One hopes that it will be a great advance with regard to confidential material.
§ 8.31 p.m.
My Lords, I rise briefly to support the Bill, the purpose of which has been so well described by the noble Lord, Lord Walton of Detchant. The need for the Bill could not have been better explained than by the noble Lord, Lord Winston, who told us of the activities of the media.
930 Before saying anything of substance, I, too, should like to pay tribute to the maiden speech of the noble Lord, Lord Kilpatrick of Kincraig. He has so well explained the need for confidentiality and the dilemmas facing the professional when deciding whether or not to disclose. But it is the professionals who have to make disclosure decisions and not the lay people. On the question of patient notes, I can never read my prescription, let alone any notes by the doctor. I am also very envious of any noble Lord who can speak lucidly with limited use, or even no use, of notes.
My support derives from the simple fact that I am astonished that there is a need for the Bill in the first place. I have no detailed knowledge of medical matters; I am merely an infrequent patient. I was always confident that medical information about myself was very hard to come by. That is due to the medical profession's ethos of confidentiality. I am sure that it is right that lay medical staff should be quite sure that they will be breaking the law by making any unauthorised disclosure.
However, anyone who dishonestly gains access to my records will be somewhat disappointed. The most titillating event to date would be the full oblation of my left large toenail in 1975 to cure an ingrowing toenail. But later there could be a much more—shall we say?—interesting event, and I should like that to be protected.
There may be some concern on the part of the insurance industry in that their ability to acquire information may be limited by the Bill. However, it is hard to justify the acquisition of medical information by dishonest means. I feel that an insurer should obtain full and voluntary access to the proposer's medical records at the time of the proposal. If that is not forthcoming, the insurer should draw the appropriate conclusions.
On a related matter concerning the principle of voluntary disclosure, the Inland Revenue was at one point making inquiries regarding my affairs. I immediately wrote a letter to the bank manager which effectively placed a duty on him to disclose to the revenue anything that he thought might interest it. Very soon afterwards all outstanding matters with the revenue were cleared up. Presumably it was confident that I had nothing to hide.
However, I have a general moral concern regarding medical, as opposed to life, insurance. I fear that in the long term we may drift towards universal private medical insurance instead of our current NHS arrangements. What will happen to people or families who are medical disaster areas? What would happen if we eventually reached the situation where one had to have private medical insurance to obtain decent medical cover but the premiums were based on medical history? I do not object to private medical insurance, but I fear it becoming a universal requirement.
As the noble Lord, Lord Walton, implied, the Bill does not go much further than the Government's amendment to the Criminal Justice Act except that it will cover information held on hard copy—that is, the medical notes. I hope that the Minister can support the Bill even if she would wish to amend it in Committee.
§ 8.35 p.m.
§ Baroness Robson of Kiddington
My Lords, first, I welcome the Bill so ably introduced by the noble Lord, Lord Walton of Detchant, and thank him for the clear and detailed way in which he introduced it. I should like to say also what a very special privilege it has been to listen to the maiden speech of the noble Lord, Lord Kilpatrick of Kincraig. His speech was very moving with its vivid examples of the dilemmas faced by the health profession. One of the frightening suggestions that he made was that the fear of unwanted disclosure of confidentiality might lead doctors to reduce their notes to such an extent that they might not be as useful to the patient's care as they should be. We are grateful to the noble Lord and we look forward enormously to his taking part in debates in this House not only on the health service but, above all, on problems such as the one that we debate tonight.
In opening his address, the noble Lord, Lord Walton, pointed out that all the medical authorities—the nursing and midwifery authorities, the Association of Community Health Councils for England and Wales, the Patients Association and the data protection registrar—are in favour of the Bill. But, apart from that, the Bill has received all-party support from MPs from all parts of the House.
It is certain that such a Bill has been needed for a long time, but it has become even more important, as has been said by all speakers, in view of the intention to introduce a nationwide computer network to link clinics, hospitals and GP surgeries, as well as allowing access to other bodies and individuals engaged in the care of patients. That includes social services, voluntary bodies and private healthcare providers. Without a doubt, the introduction of a nationwide computer network can, if properly safeguarded, confer great benefits for the treatment of patients. But it must be accompanied by proper safeguards for the confidentiality of patients' records.
The Minister has been kind enough to send me a copy of the guidelines sent to all National Health Service bodies on the protection and use of patient information. I am grateful for that. However, in my view, guidance is purely guidance and has no statutory framework to enforce it. The guidance relates only to NHS bodies. Health care professionals are accountable already to their regulatory bodies for breaches of confidentiality. But the introduction of a nationwide computer network will enable many other people to have access to patients' confidential records and they do not have the same regulatory bodies governing their behaviour.
The Bill aims to ensure that personal health information is equally well protected when handled by non-health professionals, both within and outside the NHS. The noble Lord, Lord Walton, referred to the various Acts that exist to deal with data protection. In their own way they are laudable, important and necessary. Together, however, they do not cover the whole field of the protection of confidentiality. For example, Section 161 of the Criminal Justice and Public Order Act 1994, the latest Act, relates to computerised records only. It makes it illegal to procure or sell data, 932 but it does not mention the illegality of procuring and selling manual data. The Act does not relate to individuals disclosing information. Manual records also include, for example, videos made for treatment or teaching purposes. There is a great danger in that field.
There is no overall statute relating to disclosure of personal health information, although such information may contain the most intimate details of a person's life. The Bill seeks to extend the principle of confidentiality to health bodies outside the NHS, including independent contractors. But also, for the first time, it extends the confidentiality principle to manual records. That is of great importance because we have all been present in GPs' surgeries where the same thing happens as was mentioned by the noble Lord, Lord Winston. In trying to find a patient's records, someone pulls out a number of records and they lie there. The opportunity exists for someone to gain information about another individual.
Clause 8, therefore, is important when it demands that all officers and employees, students, volunteers and independent contractors must have clauses in their contracts of employment to protect patient confidentiality. The other two most important clauses are Clauses 3 and 4. Clause 3 prohibits the use of personal health information other than for purposes for which it was originally given. That is except in cases where there is a pre-existing statutory requirement to report. The noble Lord, Lord Walton, referred to matters such as serious threats to public health or the risk of a serious crime being committed. Clause 4 defines when a health body or professional may disclose health information without the patient's consent.
The Bill is needed in order to safeguard the trust between health professionals and patients. The EC directive on data protection demands that the law be in place by 1998. The information technology revolution which is still in progress demands that we have on the statute book an Act to protect the personal information contained in patients' records, whether computerised or manual. I sincerely hope that the Minister will tell us when she replies that the Government will set aside time to enable the Bill to become an Act of Parliament and safeguard the private confidential information of patients.
§ 8.45 p.m.
§ Lord Carter
My Lords, in speaking to the Motion I wish to make the usual disclaimer from this Box that as it is a Private Member's Bill I shall be speaking in a personal capacity and not as Opposition health spokesperson. I wish to thank the noble Lord, Lord Walton, for introducing the Bill and explaining it so clearly. He speaks with enormous experience and authority on the matter. Like my noble friend Lord Winston, I wish to give the Bill a cautious welcome. Also like other noble Lords, I should like to congratulate and thank the noble Lord, Lord Kilpatrick of Kincraig, for an outstanding maiden speech. It occurred to me, when he said that his heart rate had increased, that with the noble Lord, Lord Walton, and my noble friends Lord Winston and Lord Rea, he would have been in extremely good hands if anything untoward had happened.
933 Having examined the Bill, we shall wish to introduce some probing amendments at a later stage. I shall briefly refer to the subjects later. The need for confidentiality of medical records goes back a long way. Like other laymen, I had heard about the Hippocratic Oath but I was impressed to discover that it includes the statement:Whatsoever things I see or hear concerning the life of men, in my attendance on the sick or even apart therefrom, which ought not to be noised abroad, I will keep silence thereon, counting such things to be as sacred secrets".That is the essence of the Bill.
A regulatory framework which covers personal and sensitive information which is found in medical records is bound to be a difficult area. It must be informed by practical understanding of the implications that it has for the delivery of patient care and must reflect and facilitate a proper balance between the needs of the patient and the needs of the medical profession. The need for good practice in the secure and confidential handling of information is ever more fundamental to the professional responsibilities of all who are engaged in the provision of healthcare. We all understand that the quality and efficiency of healthcare services depend on good communication between patients, professional people and carers and other lay people involved who could be sited in home, community and hospital settings. Information is, and must be, shared within multi-professional teams which are often widely spread. It must be aggregated to provide the overview necessary for disease management and to guide the setting of policy and priority. That can only be achieved with, as we have heard, good management of the confidentiality, integrity and access of all information.
Obviously the whole area of computerisation comes into it and that has been mentioned. We can all agree that what is now needed is a way to manage the process of change so that the substantial benefits that computerisation can bring for individual patient care are realised.
If we put together all those considerations the question which the House must consider is how the Bill attempts to measure up to those considerable requirements. I was pleased that in introducing the Bill the noble Lord, Lord Walton, explained exactly who would be covered by it. I wondered about the private sector and how it would be covered. It would be helpful if, when he responds to the debate, he could make it absolutely clear that private hospitals, clinics and those who work in them, both the medical professions and laymen, are covered by the Bill's provisions and that patients in those establishments do not have to rely on the common law, as is the case at the moment, for the protection of their records.
A number of noble Lords mentioned the guidance. I too wish to thank the Minister for sending us a copy which has been extremely helpful. The guidance marches alongside the Bill because it was only produced on 7th March. How does it interact with the Bill? Does it have the force of law? I presume that only the common law can be relied upon to enforce the guidance except in certain specified examples which are given in 934 it. I ask the noble Lord, Lord Walton, if the Bill becomes law, what is the status of the guidance? How does it relate to the Bill?
We have heard all about computerisation and the proposed NHS network. It is obviously part of the area covered and affected by the Bill. This is an opportunity to ask the Minister what is the situation regarding the negotiations between the BMA and other bodies and the NHS regarding the security of computerised information through the NHS network. How do the Government view the proposals for the encryption of medical data and the recommendations of Mr. Ross Anderson, the computer consultant, engaged by the BMA as an adviser? This point was made by my noble friend Lord Winston. Have the nine principles of data security set out in Mr. Anderson's article in the British Medical Journal on 13th January been accepted for the NHS network; or is negotiation still going on? We heard from my noble friend Lord Winston that there are some problems in this area. This is an opportunity for the Minister to tell the House how the negotiations and discussions are proceeding. They all relate to this Bill. It would also be extremely helpful to know the Government's stance regarding the letter sent to the NHS trust by Mr. Sandy Macara on 25th January.
I was struck by the example that my noble friend Lord Winston gave in relation to the Human Fertilisation and Embryology Bill. I was a health spokesman at that time, together with my noble friend Lord Ennals. We gave the most exhaustive consideration to the Bill, and to the Act in its first incarnation. I had to deal with it when it came back to the House. Already, within two years we found that we had missed something. We discovered that the original Act was much too restrictive in the area of exchange of information between doctors. That is an experience we must bear in mind. I am sure that the noble Lord, Lord Walton, will have that in mind when he considers how the Bill could be improved or extended to cover the sorts of points that, despite the most careful consideration, we discovered we had missed on the first run-through of that very important Act.
As we heard, the common law right of confidentiality has been relied on in the past as the basis for protecting the patient's rights. That right will still exist if this Bill becomes law. I ask the noble Lord: are there any areas of medical practice that are not covered by this Bill where the patient will still have to rely on his rights in common law to protect the confidentiality of his medical records?
I know that the noble Lord is aware that the Law Society has raised two specific areas of concern that we shall certainly wish to probe in Committee. The first relates to exceptions to the unlawful disclosure provisions where the information is required,for the conduct of proceedings before any court or tribunal (being proceedings that have been commenced or are reasonably in contemplation)".The Law Society makes a point with which I know the noble Lord is familiar; namely, that opinion is that the wording of the Bill is, 935insufficiently broad to cover all circumstances when a patient or ex-patient, or a solicitor or someone else acting on the patient's behalf, requires … [access to] the … records".I am sure he will wish to deal with that.
The second point relates to the clause in the Bill that requires,the authorisation of a consultant or qualified health professional for the release of any personal health information, including in circumstances which fall within the exceptions defined in Clauses 3 and 4".Again, the Law Society points out that that could,prohibit the speedy, efficient release of medical records to a patient, or his legal representative investigating a potential claim".This is an area which we shall probably have to examine in Committee.
The Bill applies only to England and Wales. I was interested as a layman to know why, and how, the confidentiality of the records of patients in Scotland and Northern Ireland is protected. I was extremely pleased that the noble Lord pointed out before I did (he stole my point) the Henry VIII effect of Clause 11. As I understood him, he intends to introduce an amendment to deal with that. I think he should also consider that subsections (2) and (3) of Clause 11 give extensive powers by regulation to,extend the provisions of this Act to any other class of body or person connected with the delivery of health care … make provision for additional exceptions from Sections 3 and 4, and … different provision for different cases or classes of case, including different provision for different health records or different classes of health records".When the noble Lord considers an amendment to this clause to deal with the Henry VIII point he might also consider whether in fact subsection (4) should be amended to include that statutory instruments should be subject to the affirmative resolution rather than the negative route. These are substantial changes in the nature of the classes that the Bill covers. It is the sort of area which I suspect precedent would show would be better dealt with by the affirmative rather than the negative route. It is a technical point, but an important one.
It will be clear from my remarks that we welcome the intention of the Bill. We shall certainly wish to probe in detail in some depth at later stages of the Bill. As this House always does, we shall wish to see constructive improvement where matters are not clear.
In conclusion, I repeat my thanks to the noble Lord, Lord Walton, for introducing the Bill. As we heard from the professionals in this debate, it deals with an important and sensitive area of public policy. We all await with interest the Government's view of the Bill.
§ 8.55 p.m.
§ The Parliamentary Under-Secretary of State, Department of Health (Baroness Cumberlege)
My Lords, whatever our views on whether further legislation is required in this area, we are extremely grateful to the noble and distinguished Lord, Lord Walton, for giving LIS the opportunity to debate this important and, over the years, very difficult and contentious subject.
936 It also affords an opportunity to welcome the noble Lord, Lord Kilpatrick of Kincraig, past president of the General Medical Council, to this House. Many of us are aware of the noble Lord's outstanding commitment to the protection of patients and to improving standards of professional practice. His determination to ensure a safe passage for the Medical (Professional Performance) Act last year was impressive. It is certainly entirely fitting that his maiden speech should be devoted to the protection of patient information. We look forward very much to hearing more from the noble Lord. Without a doubt we shall benefit from his wise counsel and his delightful sense of humour. The noble Lord, despite his racing heartbeat, may be aware and, if not, I can reassure him, that their Lordships are renowned for many virtues, not least longevity.
The Bill is not a new subject for the House. Some of us may feel that we have been here before. But I have to say that my own sense of déjà vu is tempered by the knowledge—even perhaps the satisfaction—that lately we have made some very real progress.
We all rightly expect that our personal health information will remain confidential, as many noble Lords pointed out tonight. This principle already has legal force through the common law duty of confidence through the Data Protection Act for the increasing proportion of health records held on computer and through various specific statutory restrictions, for example, on the disclosure of information relating to sexually transmitted diseases. There is also legislation which applies in particular circumstances, such as the Computer Misuse Act and the section of the Medical Act which makes it an offence to impersonate a doctor.
In addition, the duty of confidence is set out clearly in the Patient's Charter. And, as the noble Baroness, Lady Robson, said, in the case of healthcare professionals, it is covered by ethical codes of conduct. Also, a number of NHS bodies include the duty of confidence in their employment contracts. However, whatever the safeguards, the unauthorised disclosure of patient information must be regarded as a serious disciplinary offence. So we already have quite a lot of rules and regulations.
The noble Earl, Lord Attlee, drew our attention to insurers saying that they should have access to information when an insurance proposal is submitted. It is right to get the balance correct between the interests of insurers and patients. The Access to Medical Reports Act governs reports written for insurers and employers and ensures that patients can see and correct or comment on their contents before insurers receive them. As a result of co-operation with the ABI following concern in this House, insurers no longer ask certain questions about whether a person has had an HIV test or not.
However, what we also need—I accept that the Bill sets out to do it—is an understanding of the circumstances in which it may be permissible to use identifiable information for purposes other than direct care and treatment. This need not be to the detriment of confidentiality. It is more a case of ensuring that such 937 information is seen only by those who have a genuine need for it, who must use it only for a given purpose, and who fully understand the duty of confidence.
This is what the Department of Health's newly published guidance, referred to by the noble Baroness, Lady Robson of Kiddington, and the noble Lord, sets out to do. This booklet is the successor to a consultative document, issued in 1994, which drew 175 responses. These came from all quarters; from the professions, from patient groups, the NHS and the data protection registrar. The department has done its very best to take account of those views and indeed others expressed in a number of further discussions.
The noble Lord, Lord Walton, referred to withdrawal of the Department of Health from certain discussions. I understand from discussions only this morning with my right honourable friend the Secretary of State that there have been continuing contacts with a wide range of bodies on these issues. In particular there have been a number of meetings with the BMA over the past year and indeed, I believe, some recent correspondence which was good humoured.
The guidance emphasises at the very outset that patients—and that of course refers to all of us—do indeed expect personal information to be treated as confidential, as so forcefully put by my noble friend Lord Milverton. The guidance stipulates—and this underpins the guidance as a whole—that patients must be made fully aware of the reasons why NHS staff, and sometimes staff of other agencies, need controlled access to patient information. This is in order to deliver, plan and manage services effectively, to train staff, to research medical and health service problems, and to ensure public accountability. We appreciate, as does the noble Lord, Lord Walton, that information used for these broader purposes need not always be identifiable. So, as added protection, the guidance makes clear that such information must be anonymised wherever possible.
The noble Baroness, Lady Robson, I know, feels that the guidance may not be strong enough, and indeed the noble Lord, Lord Carter, asked how it reacts with the common law. It reflects the existing common law. It explains how the NHS can comply with that law. It is health service guidance and health authorities must make arrangements to comply with it by November. Health authorities are also strongly advised to ensure that the terms of confidentiality are in employees' contracts. We have tried to bolster it as much as possible.
We recognise that there is a balance to be struck between the undoubted right of individual patients to confidentiality and the interests of patients as a whole in having access to a health service that is able to respond to their varying needs—a point very graphically put by the noble Lord, Lord Winston. What we do not want—if I may borrow the metaphor of one clinician who has commented on this subject recently—is the modern day equivalent of a man with a red flag walking in front of a motor car.
938 I have to say, frankly, that the Government's present view is that the various interests can best be met within the current law, bolstered as it now is by the department's guidance. There are several reasons for this.
Most importantly, the nature of health care and the public's expectations of it are constantly evolving. I believe our new guidance, backed up by the range of existing provisions and the use of clinical judgment, steers a careful path without imposing a straitjacket. It covers the point made by the noble Lord, Lord Kilpatrick, that it is of the utmost importance that patients are informed about the uses to which the information is to be put before the information is collected. The Bill, as I understand it, makes no such emphasis.
The noble Lord, Lord Winston, and the noble Lord, Lord Kilpatrick, also highlighted some of the difficult dilemmas faced by clinicians. This is precisely the reason why it is so difficult and may be undesirable to legislate. It could create more problems than it solves, as the experience of the Human Fertilisation and Embryology Act 1990 has already shown us.
We have also seen, for example, the sad results in some cases of people suffering from mental illness where information needed by one agency or member of staff is not, for whatever reason, passed on. As a result, both the patient himself and members of the wider public have been poorly served. I am not suggesting that information should be passed on without regard to its purpose. The new guidance makes clear that patients receiving joint care should be made aware, as part of routine care planning, that some information will need to pass between agencies if care is to be properly co-ordinated. That is another point aptly illustrated by the noble Lord, Lord Kilpatrick. We say also that a judgment may need to be made in particular circumstances as to whether the public interest or public safety outweighs the duty of confidence. What we do not want to do is risk legislative inflexibility. We have always been able to cope with exceptional or difficult circumstances and we need to be able to cover those in the future.
I would like to address the concern of the noble Lord, Lord Walton, that employees of health authorities, GPs and the private sector health care providers are not restrained from giving out confidential information. They are of course subject to the common law duty of confidentiality both to patients and their employers. Indeed, we have seen some recent cases that have been brought to court that have proved that the common law holds good.
My noble friend Lord Milverton and the noble Lord, Lord Winston, mentioned press interest in individual cases. Indeed, the Bill does not actually stop the press divulging confidential and sensitive information. It only binds the health professional once the press has the information from whatever source, and in this case the Bill has no application.
There are other considerations. The noble Lord, Lord Winston, said tonight that he felt that perhaps the timing of this Bill was not quite right, and that is a view 939 that we share because by October 1998 the United Kingdom must implement the EC directive on data protection. This will apply both to computerised and certain categories of manual records. The directive is of general application and is not confined purely to the health sector. Its precise implications have still to be determined. The Home Office is about to mount a public consultation exercise which will seek views on the implementation of the directive, including its implications for health records. Some new legislative provision will almost certainly be needed. I suggest that we would be wrong to legislate specifically for patient information at this time when we are having to consider the need to make changes to the existing general data protection regime.
In the light of tonight's debate, I shall be glad to give a commitment to look at the need for further, specific legislation relating to health but as part of the wider consideration being given by the Government to implementing the European directive on data protection. At that time we shall be in a position to take into account the effect that our guidance has had as well as other work which may help to offer even greater reassurance to patients.
I know that the NHS executive has been giving detailed attention to computer security. An information security manual was published this week to support all the practical steps which must be taken to enable computer users in the NHS to follow the principles set out in those guidelines. The networking security policy and guidelines issued last December will ensure that future networking in the NHS will be much more secure than it has been in the past. The NHS executive will continue to study the means of making further improvements.
The noble Lord, Lord Carter, wanted to know the state of negotiation between the BMA and the Department of Health on computer security. The Department of Health and the BMA continue to have regular discussions on issues of security, including encryption. The noble Lord also asked about Scotland. I understand that Scotland has a non-statutory code which has worked well for several years. I am afraid that I cannot reply on Northern Ireland. I find that the noble Lord puts his points at a most alarming rate. It is rather like a battery of bullets that whizz over my head. I am aware that I have not answered all his questions but with his indulgence I shall write to him.
The Bill contains a number of features that we can readily commend. I doubt that the aims of the noble Lord, Lord Walton, and those who support the Bill and the aims of the Government are very different. It is clear that we both want patient information held securely. But if I may say so, the Bill concentrates unduly on the role of the medical profession in an age in which to be effective services must be delivered on a multi-professional and, as I said, a multi-agency basis.
We are concerned also by the burden of statistics collection that the Bill would impose, with the number and nature of disclosures being published on a statutory basis. We feel that that is very bureaucratic, if indeed it is workable, and not the best use of valuable staff time: patients before paper.
940 The Government consider that their own guidance, based on the existing law, offers a more practical and flexible way forward. We shall carefully review its impact. If it proves to be insufficient, we can look at it again. We can do that once we know where we stand in relation to the EC directive. In the meantime, though I fully appreciate the best of motives behind it, I regret that the Government are unable to support the Bill, which, although it may be disappointing, comes, I know, as no surprise to the noble Lord, Lord Walton.
§ Lord Winston
My Lords, before the Minister sits down, perhaps I may raise one point. It seems to me that there is something of a paradox here. The Government supported the notion of protection of confidentiality for in vitro fertilisation and still regard that as useful. I wonder whether the Minister could briefly address the issue that troubles me and probably others also. There is one set of patients who seem to be legislated for but people going through other medical treatments are not so treated. Would she address that paradox? It seems to me to be an important principle in consideration of this whole matter.
§ Baroness Cumberlege
My Lords, quite frankly, there is something of an anomaly. The noble Lord will know that the Human Fertilisation and Embryology Act 1990 regulates the circumstances in which disclosure of specified information is permitted and that centres are licensed. It is a very draconian Act in some ways. As the noble Lord said earlier, it has brought us some difficulties. We are aware of that. Because we shall be subject to the EC directive, it seems to us inappropriate now to bring in more legislation which may land us in the same kind of difficulties as did the 1990 Act in the case of human fertilisation and embryology. Although we do not rule out legislation for ever and a day, the timing is not right. We should want to reconsider the matter when we have had a chance to build it into the EC directive.
§ 9.13 p.m.
§ Lord Walton of Detchant
My Lords, I am very grateful to all those who have chosen to speak in what has proved to be for me an extremely interesting debate. In particular, I echo the congratulations which have come from all parts of the House to my noble friend Lord Kilpatrick on his sensitive and moving maiden speech, in which he painted a vivid picture of some of the everyday dilemmas of clinical practice that face all doctors in this very difficult area of confidentiality, based on his own personal clinical experience.
I was grateful to the noble Lord, Lord Winston, for his qualified but warm support for the principle of the Bill. I was grateful to him also for drawing attention to some of the problems that already exist in relation to the confidentiality of medical records and of the difficulties which arise in many medical records departments in the NHS. I thank him too for the points he made in regard to the problems with the media; they are extremely difficult. They are problems that might arise if the Bill progressed further, because the question would be: under law, who would be liable to a criminal prosecution? Would it be the media that used the 941 information or the individual in the health service who released the information to the media, for whatever purpose? Those are difficult issues which may need to be examined.
I thank the noble Lord, Lord Milverton, for his talk from the standpoint of a priest and his willingness to support the view that we should close gaps in existing provisions. I express my gratitude to my noble friend Lord Attlee for his support and for drawing attention to the important matters relating to the stance of the insurance industry. That is an issue which may need to be further examined, though my belief is that the Access to Health Records Act and the existing recognition that a patient may give valid consent to the disclosure of personal medical information would meet most, if not all, the anxieties expressed by the insurance industry.
I am grateful to the noble Baroness, Lady Robson, for her welcome for the Bill. I was glad to hear that she feels that legislation is needed and that the guidelines alone must ultimately be reinforced by statute.
I thank the noble Lord, Lord Carter, for his cautious welcome and note that he would wish, if the Bill proceeds to Committee stage, to introduce some probing amendments. There is no doubt that he is right in saying that something must be done to protect the private sector, which is presently under common law duty. Those of us who have looked carefully at the issue do not feel that the existing common law provision is sufficient to protect confidentiality of sensitive information in that area. I can reassure the noble Lord that the intention of the Bill is to cover all areas of medical practice.
Scotland and Ireland are excluded because the laws in those two countries are somewhat different. If the Bill were to succeed, one would hope that, ultimately, similar statutes would be introduced in those two 942 countries. The point made by the noble Lord, Lord Carter, in relation to the affirmative resolution in Clause 4 is one that can certainly be taken on board.
As usual we heard a carefully considered, thorough and characteristically sympathetic response from the noble Baroness, Lady Cumberlege. She is right in saying that real progress has been made. The noble Baroness drew our attention to the many statutes and provisions which protect confidentiality as matters stand at the moment. There is no doubt that the department's guidance is valuable. But I cannot do other than stress yet again that gaps exist in the guidance. There is little in it about the principle of informed consent on the part of patients. Above all, there is a lack of overarching statutes and provisions to cover all parts of the private sector, and that is a significant deficiency in the guidelines.
I would have wished to see the Government giving qualified support to the Bill, even with the provision that they might wish to introduce amendments at Committee stage to meet the points raised by the noble Baroness. Nevertheless, I was reassured by her comments that, in view of the European data protection legislation, whatever is done and in whatever way the guidelines are applied, a statute will be required by 1998 at the latest.
In the light of the assurances given by the noble Baroness I shall certainly consult widely upon what action will be necessary in the further consideration of this Bill. Nevertheless, I feel that the government guidelines, as they exist at the moment, are insufficient and that that crucial area of patient confidentiality will require statutory examination and control in the interests of the health of the nation and, above all, in the interests of our patients.
I trust that your Lordships will agree to give the Bill a Second Reading. I commend it to the House.
On Question, Bill read a second time and committed to a Committee of the Whole House.
House adjourned at nineteen minutes past nine o'clock.