§ Mr. Archy Kirkwood (Roxburgh and Berwickshire)I am pleased to have the opportunity to raise the issue of the right of people to access to their medical records. The debate has been occasioned by the recent publication by the Department of Health "Communicating Information to Patients and their Access to their own Manual Health Records". The House will agree that it is an important subject, developments are moving quite fast and therefore it is important to spend some time rehearsing some of the arguments in public to inform and promote the process of consultation now in hand.
Two years ago I sought to create a statutory right of access to medical records when I introduced my private Member's Bill, the Access to Personal Files Bill. That Bill is now an Act, sadly in a greatly reduced form. It provides a right of access to housing and social work records, but medical records are excluded as a result of Government objection to creating a statutory right of access to medical records. At the time, the Government supported the principle of access and would seek to encourage it on a non-statutory basis through discussions with the medical profession, and the draft code of practice on access to records, which the Department published earlier this month, and which is now undergoing consultation, is the result of such discussions.
I welcome the draft code of practice. It is certainly a step in the right direction. However, my welcome is seriously qualified. A voluntary code of practice is a very poor alternative to legislation because it cannot be enforced. It allows doctors who do not like the idea of patients seeing what is said about them—and there are many—to opt out altogether. I fear that that is precisely what will happen on the implementation of the draft code of voluntary practice.
Let me explain why I seek a statutory right of access. I wholeheartedly agree with the preamble to the code which states that, normally, the best way of informing patients about their conditions and treatment is by full discussion. That must be right, sensible and proper. I am sure that, if it is handled well, proper discussion will satisfy most patients most of the time.
Those of us who advocate patient access as a matter of right do not regard it in any way as a substitute for a patient asking his GP questions in the normal way. But I believe that a statutory right of access would supplement that process, and perhaps compensate for some of the potential shortcomings. A statutory right of access would exist for a patient who wanted to be 100 per cent. in the picture, who wanted to know all the details and to understand them, rather than to rely unquestioningly on medical advice. A statutory right would exist when a doctor could not meet a patient's expectations because he might be too busy to spend enough time with a patient, or, alternatively, when a doctor was being over-protective and wrongly shielding a patient who wanted to know the full recorded facts.
I fully accept that some people do not want to know the truth, but in my experience others who do have no access to it at present. A statutory right of access would be available to patients who suspect—sometimes wrongly—that the truth is being withheld and who would be satisfied only by access to the written record. A statutory right of 1278 access would exist for people who felt that their conditions were not being taken seriously enough and who wanted to check that their full medical history was being recorded and contained no mistakes. Finally, a statutory right of access would help patients who believed that their treatment had gone wrong in some way and wanted to know what had happened.
For all those reasons, it is important that we allow a statutory right of access to medical records.
As I said earlier, I am pleased that the Government endorse the principle of patient access, but, given that they accept the principle, I find it difficult to understand why they object to a statutory codified form of legislation. I am amazed that we should still be so tentative about legislation. People now have a legal right to see their social work and housing records. We have been promised regulations on access to education records later this year, so why are medical records so different?
There are significant though inconsistent rights to medical records already. As I am sure the Minister knows, if medical records are held on computer, patients have access to them under the Data Protection Act 1984. An increasing number of general practitioners are computerising their surgery records, and those who belong to a practice which has a computer can check the records for accuracy, see the details of any test results and talk to their doctors from a more informed position. All those benefits are denied to those whose records are held on paper in manilla folders. In addition, since this January, patients have had the right, enforceable under law, to see reports which their general practitioner sends to an employer or an insurance company. That right is available to patients under the Access to Medical Reports Act 1988, which I introduced through the private Members' procedure last year. Therefore, precedents already exist for a statutory code of access.
Lest the House is worried about the unfettered nature of the proposal and the problems that may flow from legislation rather than a voluntary code, let me say that the legislation will not mean that access is absolute and completely unrestricted. The order introduced under the Data Protection Act 1984 contains entirely reasonable and proper exemptions and exceptions. For example, a doctor can withhold information which might cause serious harm to the patient. It is right and proper that a doctor should have such a legal let-out. Information about other family members or individuals can also, quite properly, be withheld. Information which identifies someone who has spoken to the doctor in confidence about the patient can also be withheld. A sophisticated framework of exemptions and exceptions already exists.
Legalising access will not mean that important concerns will be overlooked. It will make it clear that doctors cannot refuse access simply because they do not like the idea. The law does not, and should not, give way merely because doctors are accustomed to a paternalistic style of medicine and are not prepared fully to share information. If patients think that that is happening, they may go to court to enforce their rights. That approach was adopted under the Data Protection Act and the Access to Medical Reports Act, and I cannot understand why the Government are backing off here and implicitly endorsing an approach that will allow doctors who do not like the idea to ignore patients' requests for access to their medical records.
I agree that the system will work better if it is embraced by the profession in a positive spirit. The signs are not 1279 good that the code of practice will be so embraced. As the Minister knows, and as I said earlier, an agreed code was promised in April 1987 and has taken more than two years merely to see the light of day in draft form. Even now it apparently has only the profession's provisional support. I fear that rather than encouraging compliance in a positive spirit, a voluntary approach will lead to large scale opting out.
I have some specific comments to make on the draft code and should be obliged if the Minister would clarify those points which are still vague. First, as it stands, the draft code proposes to allow access only prospectively to what is recorded after it comes into force. I understand that there are good reasons for that.
The code contains a serious restriction. It seems that, under the draft code, patients will be unable to see everything recorded after the starting date, but will be limited to information about individual consultations or specific episodes of treatment. Someone who suspects that a mistake has been made in the records will be unable to go through them all to find it. Someone with a chronic illness or personal disability will be unable to review what has been written during a certain period, but will be allowed only small peeks at specific parts of their own medical records. Certainly no such restriction exists under the Data Protection Act, and there is no reason why it should possibly be justified here. I would be interested to hear the Minister's justification of it.
Secondly, in the draft code, health professionals are given much wider discretion to withhold information which they believe might harm the patient. As I said earlier, some exemptions and exceptions must be available to the health professionals so that they can protect patients when necessary.
Under both the Data Protection Act and the Access to Medical Records Act, the doctor must believe that there is a risk of serious harm to the patient's health before information can be withheld. The code of practice uses a different formulation. It says that information can be withheld where access would be likely to cause serious risk of harm. That is a simple but important difference. It means that if there is a real risk of minor harm, for example, of upsetting the patient, information can be withheld.
I hope that the Minister will be able to explain why the formulation used in previous legislation has been changed in that way because one argument of which the Department convinced me was that there is merit in having consistency throughout both the data protection legislation and the other Acts dealing with access to various personal files.
Thirdly, I notice that the code proposes that access will be permitted to allow patients
to better inform themselves about their health but for no other purpose".What does that exclusion mean? Suppose someone is applying for a disability benefit and wants to support his or her case by citing extracts from the medical record. Will that be permitted under the code? Suppose a patient wanted to document a complaint to the Health Service ombudsman, to a family practitioner committee or to the General Medical Council about the way in which he has been dealt with. Are they to be denied access under the specific part of the code that I mentioned earlier? Is the object of the exclusion clause to restrict the access of people who believe that they may have been the victims of 1280 a medical accident? If so, again I wonder why. The Minister would help and inform the process of consultation if he could say a word about the background thinking on the exclusion clause.The Government may think that I am being slightly churlish about this because, of course, a voluntary code is a step in the right direction. It gives the right signals—and I support that—but it does not give very much more than a signal to the medical profession. I know that the Government want to see progress, and I very much appreciated the help that I received from the Department and from the Minister's predecessor in putting the Access to Medical Records Act on the statute book. I understand that that was not an easy thing for the Government to do. However, if the Government accept that the principle of access is correct, the logical conclusion is to make access a right that cannot be avoided without good reason. That would require legislation as a basic framework for enshrining the rights. I believe that those rights will come sooner or later, and I believe that the time to introduce them is now because otherwise these voluntary regulations will merely create a medical backwater that will allow doctors who do not like the idea to resist disclosures in future.
As far as I am concerned, the regulations are now on probation. If the profession does not respond positively, I warn it fairly and squarely that it will face a continuing clamour for statutory action to be taken as a matter of urgency to provide patients with the legal rights to which they are entitled, but which they are currently being denied.
§ The Parliamentary Under-Secretary of State for Health (Mr. Roger Freeman)I congratulate the hon. Member for Roxburgh and Berwickshire (Mr. Kirkwood) on his success in the ballot and pay tribute to his intitiative in the past in this area and to his sustained interest in this subject, which we all respect.
Although I am a relative newcomer as a Health Minister, I have focused my mind on this subject recently thanks to the hon. Gentleman drawing my attention to it in a meeting that I had with him and other colleagues. It is an important subject and I assure him that I take it seriously, following through the commitments and promises made by my predecessor and other Government colleagues.
Although there has been no automatic right of access to manually stored medical records, the Department has always recognised that it is good practice for health professionals to be as open and informative with their patients as possible.
I fully accept that what we are talking about in this debate are manually stored records and not those on computers, which are already subject to the Data Protection Act 1984, and, indeed, medical reports which are subject to the legislation to which the hon. Gentleman referred. I would draw a distinction, as I am sure he would, between medical reports and medical records, by the very nature of the way in which they are prepared. Medical reports are specifically written for external consumption and are entirely different from the kind of medical records about which we are talking, which are very often hand-written and not put on computers. One of the regrets is that in the area of primary care we have not made 1281 perhaps the advance that we should have made in providing computer assistance to general practitioners—both the hardware and the software—to store data about patients.
I can confirm that the Department of Health will be taking an initiative in this area to accelerate the wider use of personal computers by general practitioners. Only about 50 per cent. of doctors have access to computers, which I believe can play a valuable role not in storing the complete medical records of patients, but in storing key data—for example, for call and recall systems for screening, for providing a profile that might be useful in setting indicative budgets, and for managing their practices.
While supporting a policy of openness, the Government have not inclined towards the need to legislate to provide access to medical records. Apart from the need to protect those patients who might be susceptible to harm from the information itself, the procedures to provide a statutory right of access, combined with appropriate safeguards to ensure that information about third parties is fully protected, would be complex.
The hon. Member for Roxburgh and Berwickshire was a little illogical. He welcomed the new draft code of practice, which we are putting out to consultation and which we hope will be adopted and operational from the end of the year, but he also argued that it would not work and that we should move to a statutory system. I believe, because we need the co-operation of doctors, that it would be better to move to a system of voluntary practice and to see how that works. I accept that there may be problems and that the House will return to the problem of individual cases of access. The Government do not rule out legislation for all time. However, we are firmly saying that we want the co-operation of the medical profession and that the best way to proceed at present is by way of a voluntary code.
In recognising those impediments to statutory provision for patients' access to medical records, the Government also acknowledge the view of those representing the interests of patients, including many Members of this House and in another place, that the current arrangements fall short of public aspirations and even greater openness must be achieved, on a voluntary basis if possible. As I have said, many representations have been made that, if that does not work, it must be achieved ultimately by statute. However, we should first try the voluntary code.
Hon. Members may remember that during the passage of the Access to Personal Files Act in 1987, there was not insignificant pressure to include medical records within the provisions of the Act. My right hon. and learned Friend the Member for Ribble Valley (Mr. Waddington), then Minister of State for the Home Department, was able to give a clear undertaking that Health Ministers would enter a dialogue with the profession. At the Committee stage of the Access to Personal Files Bill, he stated:
If more openness is what hon. Members on both sides of the Committee want, they should know that they are pushing at an open door. The Government and the profession are in favour. Therefore, I am willing to give an undertaking today on behalf of my colleagues with responsibilities for health that they will enter into talks … at an early stage with a view to 1282 achieving substantive and timely progress in opening up medical records further on a non-statutory basis."—[0fficial Report, Standing Committee C, 1 April 1987; c. 60.]I believe that the Department has honoured that undertaking, and has sought the agreement of the medical profession to a statement and code of practice concerning access by patients to their medical records. In the course of discussion, representatives of the profession recognised the need to encourage the profession in good communication with patients. Nevertheless, they conveyed serious reservations about a code giving patients the right to see their records and the dangers if patients were to rely on their own interpretation of doctors' notes rather than on the professional advice of their medical practitioners.These anxieties were discussed with the profession's representatives in March 1988 by my right hon. Friend the Chancellor of the Duchy of Lancaster and Minister of Trade and Industry, then Minister of State for Health, and my hon. Friend the Member for Derbyshire, South (Mrs. Currie), then Parliamentary Under-Secretary of State for Health. My hon. Friends noted the points made by the profession and advised that its proposals for giving more information without conceding access to the records would be unlikely to satisfy public expectations or parliamentary demands. The Department of Health then accepted the profession's suggestion that discussions should continue further.
I can assure the House that, in continuing the discussions, we were and are mindful that positive progress must be made. For that reason, in my contribution to the debate on the Access to Personal Files (Social Services) Regulations 1989 on 7 February this year, I advised the House that discussions on a voluntary code of practice on access to medical records were proceeding and that, although agreement had not yet then been reached, substantive progress had been made.
As the hon. Gentleman knows—he intervened in that debate—I gave an assurance that, if progress could not be made in negotiations at the official level, I would personally intervene. That intervention was not necessary, because, I am glad to say, with the willing co-operation of the medical profession, we produced a draft code, and it has been placed in the Library of the House.
I announced also the Department's proposals to consult over a three-month period with interested parties. It is important that, having accepted the principle of access to patients' manual records, such access should not be confined solely to medical records compiled by doctors, but should encompass records compiled by other health professionals about their patients. We are talking about more than general practitioners. The code of practice will therefore refer to manual health records, and consultation will be extended to representative bodies of health professionals other than doctors. The hon. Gentleman has probably seen in the annex to the draft code a list of the health professionals as defined. It includes registered medical practitioners, registered dentists, registered opticians, registered pharmaceutical chemists, registered nurses, midwives, health visitors and so on. I am sure that the hon. Gentleman and the whole House would welcome that.
The draft code of practice is a commendable compromise between what I believe most hon. Members would like to be achieved in removing obstacles to patients having access to information recorded about them and the 1283 legitimate concerns by some of the medical profession's representatives for the implications of such a code for patient care.
I will now deal with the hon. Gentleman's four specific questions about the code of practice. It is a relatively brief document, which is out for consultation at the moment. The principle behind it is that it is the health professional's duty to inform patients about their condition.
§ Mr. KirkwoodOf course.
§ Mr. FreemanThe hon. Gentleman says, "Of course." That will happen in most cases. It is a sensible way in which to proceed. The hon. Gentleman is concerned about the minority of cases in which that does not happen.
The code provides also that health professionals may judge that, normally, the most helpful way of informing patients about their condition and treatment and meeting their expectations is by full discussion. Health professionals may consider it necessary to show patients the information that is recorded about them. The hon. Gentleman and I would hope that that will happen in appropriate circumstances. However, the code states that those who remain dissatisfied must be allowed to see information recorded about them.
The hon. Gentleman's first question was about why that is prospective and not retrospective. General practitioners' manual records will be voluminous, extensive, make references to third parties, and may make unflattering remarks about a patients' lifestyle and whether advice has been taken. It is fair and sensible to operate the code of practice prospectively from the date on which it comes into force, which I hope to be by the end of the year. Then, the medical profession, whose co-operation we need on this subject, will be on proper notice that the information that they record at each consultation, after each diagnosis and after each hospital visit will be open to inspection. I believe that that is the fair, practical and proper way to proceed.
If the patient asks for access to his records his request must he in writing. The hon. Member for Roxburgh and Berwickshire asked why there was not wider right of access not just to episodes in the patient's clinical history, but to information relating to a number of years. He wanted to know why a patient could not go to his doctor and say, "I want to see my medical records for the years when I lived in place X, spanning years Y and those covering a specific series of ailments from which I suffered". We require the co-operation of the medical profession and, therefore, we must put ourselves in the position of the GP. He is a busy man and under the new GP contract—
§ Mr. KirkwoodHe will be even busier.
§ Mr. FreemanNo, he will not be even busier. That will not be the result of the new contract that we have negotiated or the changes that will be introduced in two years' time as a result of the White Paper.
We appreciate that doctors seek to do their best for their patients in terms of health promotion and care. They 1284 are, and always have been, busy people. Therefore, I believe that it is reasonable and sensible that patients' requests for access to their records should be specific and should be in writing. Doctors, their secretaries and the practice managers do not have the time to search through a whole range of material to provide a precis or a photocopy of it. Initially requests should be episodic and specific—they should relate to a particular ailment at a particular time.
I am sure that the hon. Gentleman will accept that computer records are specific and they are normally presented in a clear chronological, sometimes abbreviated, format. It is much easier to gain access to computer data than manual records which might not be organised in a coherent or even a legible manner.
A health professional responding to a request for access may, at his or her discretion, let patients see what was recorded about them prior to the code of conduct coming into operation. That is permissive.
The hon. Gentleman is right to say that access may be modified by witholding such part or parts of information as would, in the judgment of the health professional responding to a request, be likely to cause serious risk of harm to the physical or mental health of the patient or another person. The hon. Gentleman asked why we specify "risk of harm" as opposed to simply "harm". I am grateful to the hon. Gentleman for drawing my attention to that. When I read the draft code of practice I did not appreciate the difference between its language and precise legislative language. During the consultation procedure I shall inquire as to whether any significance is implied by the langage used. I am not aware of any significant difference, but the hon. Gentleman's remarks are on the record and they will serve as part of the process of consultation.
Access should also be modified by withholding such part or parts of the information as would identify another individual, other than a health professional acting in that capacity. I did not catch all the hon. Gentleman's remarks, but I assume that the hon. Gentleman was concerned about that modification. The exclusion clause is designed to protect another individual, a third party, other than a health professional, to whom reference might be made. It might be a member of the family, an employee or an employer. It is sensible that a patient demanding in writing access to information about a particular episode in his care, should not have the right to obtain information written by his or her doctor about another individual. That is sensible, equitable and fair.
Initial reaction to the draft code indicated a broad level of contentment with the proposals from some non-medical and patient interest groups. However, some have also registered reservations, like those which have been raised today. We intend the consultation exercise to be meaningful and my officials will consider most carefully any comments that are received. The medical profession will be advised directly about the outcome of the consultation exercise which I hope will be completed shortly and enable the code to be introduced before the end of this calendar year.