Health and Social Care Bill

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Dr. Brand: Will the Minister go through the process that he envisages in the two examples because we are now into the hard facts? This is no longer a decision based on the hard facts. It is no longer a decision for the ethical committee, but for the Secretary of State via affirmative action by both Houses of Parliament. The two examples that the Minister has cited do not justify passing on confidential information against the patient's wishes, particularly in view of the subject of research.

Mr. Denham: Let us assume that we have moved forward a few months and, by working with the organisations that I mentioned earlier, a detailed template of issues to be taken into account by any application for a registry has been worked out. Anyone wanting to run or maintain such a registry would have to apply, and failure to do so would render them outwith the provisions of the clause.

In the first instance, an application should be made to an expert advisory committee, which would consider the application against the criteria in the template and advise the Secretary of State on whether regulations should be made. The advice will be made public, so people will know what the Secretary of State was told. If, following the guidance of the expert advisory committee, the Secretary of State is persuaded that regulations should be made, draft regulations will be published, setting out how the register will operate and including any necessary safeguards. Public consultation on the draft regulations would then follow before the Secretary of State tabled regulations that would be subject to the affirmative procedure of the House. That is how I envisage the process.

Dr. Brand: That was extremely helpful, but I remain unsure whether the regulations will allow group actions to establish registers, or whether every individual research project requiring a register will be subject to the procedure.

Mr. Denham: In practical terms, the Secretary of State must be able to include a broad group of activities or circumstances within a set of regulations. It is difficult to assess precisely how many registers will exist for how many activities at any particular time, but the agreement of both Houses of Parliament will be required, which is a sensible procedure. The scheme will be broader than requiring regulations for each individual activity.

The expert advisory committee will advise the Secretary of State on the wider range of issues and requirements—not expressly built into the Bill—that must be taken into account. It will be a probing body and, to respond to the recent point raised by the hon. Member for Isle of Wight, it will be able seriously to challenge whether the use of patient information is justifiable in a particular case. An alternative way of carrying out the exercise, using anonymised information, may be possible. The body will be able to challenge institutional laziness—doing things in a particular way, simply because it has always been done that way in the past—in the NHS.

I hope that the Committee is reassured about the Bill's safeguards on the use of this power, and that I have argued effectively in favour of assessing matters on a case-by-case basis and in favour of real consultation with the NHS, patients and their representatives.

Dr. Fox: The essence of this group of amendments is simple. There is a consensus in Committee that disease registers must be maintained. At issue is whether the powers in the Bill will allow that to happen. Our view is that the powers are much too wide for the reasonable and desirable purposes that the Minister expressed.

What the hon. Member for Sutton and Cheam described as the helpful new information being made available to the Committee might equally be described to anyone outside as an example of ``making it up as you go along''. Perhaps that information should have been made widely available before the clause was debated or, indeed, before any legislation was proposed. Details of exactly how the process will work should have been made available not only to the Committee, but to the House and interested groups outside, so that they understood how any replacement of the current arrangements would be put in place. We have not had enough detail or enough time to consider the matter.

The Bill is being rushed through while we are being given bits of detail. It is still not clear to the Committee exactly what the Minister meant in several interventions. Although we all believe that registries need to be maintained, the whole process in which we are involved is an unsatisfactory way to legislate. The explanatory notes on the clause say that further guidance will be issued. That is simply not acceptable to most of us.

The Minister said that the Government wanted to open themselves up to scrutiny on secondary legislation. He has many talents, but I did not realise that comedy was one of them. The idea that the Government want to open themselves up to scrutiny, particularly on secondary legislation, is laughable to anyone who has been in the House of Commons for the past four years.

I understand the Minister's arguments about specific amendments, but I am not satisfied with his general argument. We have made our point and will seek to amend the clause later in the Bill's passage through Parliament to take into account the arguments made in Committee, notwithstanding our intention to vote against clause stand part. Under those circumstances, I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Dr. Fox: I beg to move amendment No. 325, in page 51, line 44, leave out subsection (4).

The Chairman: With this we may discuss the following amendments: No. 332, in page 51, line 44, leave out from `Regulations' to `under' in line 36 on page 52.

Government amendment No. 337.

No. 233, in page 52, leave out lines 1 to 6.

No. 234, in page 52, leave out lines 7 to 11.

No. 235, in page 52, line 18, leave out from `regulations' to end of line 19.

No. 328, in page 52, line 18, leave out `the cost of and'.

Dr. Fox: Amendment No. 325 would delete clause 59(4). If, as the explanatory notes suggest, subsection (4) is intended to implement the NHS plan commitment that

    ``letters between clinicians about an individual patient's care will be copied to the patient as of right''

that should be explicit in the Bill. Its wording is confusing on that and many other issues that we have considered this morning.

We also need detail about the practical arrangements. For example, how will correspondence be communicated to a patient? The normal mail service may not be appropriate if the recipient wishes to keep his visits to the doctor secret from those who share his postal address. The phrase

    ``to whom the information relates''

in lines 47-8 is too vague. The BMA gives an example: if the information contains genetic information of relevance to other family members, they could be understood to be included in the definition.

The wider and perhaps most important issue is the potential clash of confidentiality. A doctor may be asked to disclose information about his patient, but believe that doing so is against the patient's interest. According to other measures in the clause, however, the Secretary of State may think that disclosing the information is in the public interest. The doctor faces being in conflict on one hand with the GMC and his own ethical guidelines, and on the other with the law. The medical profession will be placed in a difficult position. Although we do not have much time, this is one of the most important issues that we have considered during the Bill's passage. I want to give the Minister enough time to respond in detail to the serious reservations that many interested groups have expressed about that potential clash.

Like the hon. Member for Bristol, North-West, I had a real job before entering the House. Leaving aside my current role, I think that doctors will look for guidance on this important ethical issue. Will a doctor's first duty always be not to disclose information that could be harmful to his patient or must he act in accordance with the law and the powers set down by the Secretary of State, which he might believe were being used in a way that was detrimental to his patient? That is a very serious issue, and I look to the Minister for clarification.

11.15 am

Dr. Brand: I share the concern of the hon. Member for Woodspring about subsection (4). Although I support the Government's approach to sharing information with patients, the drafting of subsection (4) could have some untoward effects. Patients should have the right not to receive information that they do not want. The subsection does not give that option, but requires that certain information must be shared. There is also a practical problem in that where a referral communication arises—to an orthopaedic department, a psychiatric department or a family therapy department—in connection with family problems, information about alleged activities by other family members has to be given for that referral to be meaningful. Does the subsection require that family members should also have a copy of the communication? If so, it would make the work of refuges for battered women, for example, virtually impossible because such information would be freely shared with people with whom it would be undesirable to share it. The same would apply to cases of child abuse, which quite commonly occurs in families, as we all know. Should people be obliged to pass on suspicions about a perpetrator who is a family member directly to a family member—as well as dealing with the child—before the case has become the subject of police inquiries? Although we support the concept of openness with patients, there are technical difficulties with the drafting of the subsection.

Mr. Denham: The hon. Member for Woodspring said that we had little time. We have until 5 o'clock this afternoon—there is no reason for the hon. Gentleman not to come back after lunch, but perhaps he is under pressure to be somewhere else.

The group of amendments seeks to make changes to subsections (4), (5), (6) and (7). Alterations to the subsections will not remove the Secretary of State's basic power to make regulations requiring or regulating the disclosure or processing of confidential patient information. The subsections do not provide the basic power, but make clear how we propose to use that power and the safeguards we intend to put in place.

Amendments tabled by the hon. Member for Runnymede and Weybridge (Mr. Hammond) and the hon. Member for Sutton and Cheam seek to remove subsection (4). That would have three important consequences. It would make the extent of the powers in subsection (3) less clear and in particular would remove the provision outlining how we might require doctors to pass on information to their patients. We believe that that is a key issue and that patients should have more information about their care. The provision will allow us to deliver the NHS plan commitment to ensure that clinicians' letters are copied to the patient. It will also allow the question of whether processing confidential patient information, through regulations laid under subsection (3), is lawful and will prevent the establishment of offences in relation to regulations under subsection (3).

Amendment No. 332 goes further and would remove all the safeguards we have built in to the clause, including the provision ensuring that use of the power cannot directly impact on an individual's care and treatment and that the power to require processing of confidential information should be used only where there is no reasonably practicable alternative. It also stipulates that the use of the power should be annually reviewed. We have striven to build in effective safeguards for patients and were reassured by the comments of the Data Protection Commissioner.

Amendments Nos. 235 and 328 would have the effect of making it debatable whether cost can ever be used as a justification for not adopting a reasonably practical alternative to the use of confidential information. Although one might argue that the term ``reasonably practical'' may encompass cost, the amendments would make it a matter of argument. Where costs have to be met out of funds that might otherwise be used for patient care, of course the cost of alternatives must be a consideration.

Finally, Government amendment No. 337 clarifies to whom information relating to a particular individual may be copied. It is needed because the original wording might be construed to mean that the information ``confidential to one patient'' might legitimately be copied to others to whom it also relates in some way. Although other people may have a legitimate need to be informed about something that has an impact on their own health, they should not be informed through receiving a copy of someone else's confidential details. The amendment makes it clear that the information should be released only to the individual to whom it primarily relates, or to a designated person, such a parent, it if is not appropriate to send information directly to the individual. The amendment addresses a specific concern raised with us by the BMA, which we are happy to take on board.

The hon. Member for the Isle of Wight made some sensible observations on the need to consult carefully and widely with the profession about the use of the power to make sure that we get the regulations right. It is the right direction to move in to make sure that patients receive more information about their treatment than they have previously received. There are clearly complex issues about the flows of information and what is appropriate under certain circumstances, particularly in regard to third-party information. Those issues will need to be covered carefully in regulations. It is not desirable to include in the Bill or to consider in Committee today every conceivable issue that can be raised—the hon. Gentleman mentioned a couple of examples. I acknowledge that there are important issues that we will need to work through carefully with the profession to make sure that we get the regulations right. It is necessary as part of the proper extension of patients' rights to their own medical information to ensure that certain basic rights are set out in the Bill. The hon. Member for Isle of Wight asked if that meant that patients would have to receive information that they did not want. Clearly, one would not want to be in that position and that is why the regulations will have to be very carefully framed.

 
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