Standing Committee E
Thursday 8 February 2001
[Mr. John Maxton in the Chair]
Control of patient information
Dr. Liam Fox (Woodspring): I beg to move amendment No. 324, in page 52, line 44, leave out from beginning to end of line 50 and insert
`information regarding any identifiable patient and relating to his physical or mental health or to his diagnosis or treatment'.
The Chairman: With this we may take the following: amendment No. 285, in page 52, line 46, leave out from `treatment' to end of line 50.
Government amendments Nos. 338 to 340.
Dr. Fox: This is a probing amendment on which we shall not divide the Committee. It seeks from the Minister clarification about the definition of patient information that will be useful to us when we debate later stages of the Bill.
The definition of patient information provides the Secretary of State with the potential power to ban the use of important and beneficial non-personal data but also to share identifiable health data at his own discretion. The clause states that the Secretary of State will use his powers when they are in the public interest, but that could easily become the excuse for the suppression of politically inconvenient data. The explanatory note suggests as an example that regulations to prohibit the use of anonymised patient information being used for a purpose detrimental to the operation of the NHS could lead to cancer charities and others not being able to conduct surveys on postcode rationing. We believe that the clause is an attempt to squeeze out independent criticism of the NHS reminiscent of recent debates on the abolition of community health councils.The amendment would ensure a better definition than that in the Bill as drafted; we made a similar point earlier when we complained about the lack of clarity of some of the terms and therefore of their potential use.
Mr. Paul Burstow (Sutton and Cheam): I shall explain the thinking behind amendment No. 285, which would confine the scope of the order-making powers to information relating to individual patients. It would remove from the definition of patient information that is derived from information about an individual patient. The wording of the current definition is much too wide; it refers to information so derived however recorded, to any extent, directly or indirectly, and could be used to justify control of almost any information that relates to a patient. The amendment would remove the subsection's concluding words, which extend the order-making power to anonymised statistical information.
We referred this morning to the judicial review of the Source Informatics case in 1999, much of which hinged on the use of anonymised information. The following is an extract from evidence in that case presented by the General Medical Council:
``However, the GMC sees no legal or ethical principle which should prevent the transmission of wholly impersonal and anonymous data from which no individual patient can be identified. Patient interests in preserving their personal privacy cannot be harmed if the information, which derives from their medical records, is made impersonal and anonymous, so that no individual patient can be identified, but the aggregate can be used, e.g. for the effective running of a medical practice, for clinical or financial audit, or to estimate projected future need for particular medical intervention, equipment or drugs.''
The GMC also refers to the value that can be added through private databases, which is germane to our deliberations, stating that
``it will seriously hinder the development of the useful data-bases (public and private) of research data and appropriate sharing of new knowledge and research. It may also mean that doctors registered in the United Kingdom are obliged to be more restrictive than doctors in other EU member states about the sharing of medical data, and this may hinder the free flow of medical services between such states, which I am advised and believe may be contrary to the requirements of European law. In this way, it may harm medical development and the provision of high-quality, efficient medical care.''
As the amendment and clause are drafted, a whole range of legitimate commercial uses of anonymised data will be excluded. I conclude with a final quotation about the review of private sector collection of data that the GMC put in that judicial review:
``The presence or absence of profit cannot be the touchstone of what constitutes the public interest. Medical developments may occur in the public or private sector, and there should not be a public sector monopoly upon the obtaining or use of data derived from medical records. Nor does this view reflect the reality of the way in which anonymous and aggregated patient information is used at present. There is an important public interest in ensuring that there is equal access to information without unfair discrimination.''
The amendment tries to avoid the possibility of unfair discrimination. It is worth bearing in mind that when the Monopolies and Mergers Commission was asked to look at IMS's acquisition of that company, it said something that is quite relevant to the use of anonymised information:
``services and the improvements in market information they allow would, moreover, allow scope for greater efficiency in the marketing expenditure of pharmaceutical companies (in the UK and elsewhere) and overall net savings in their UK marketing costs. We believe that this in turn is likely to benefit the UK public in that, for example, the costs of medicines to the National Health Service (NHS) and to consumers would be reduced and the choice of medicines improved''.
That was the conclusion of the MMC, not of the company but of the body that the Government have established to look at issues of competition. The case that the Government are making for the clause and, I suspect, against the amendment, is that allowing the private sector to be able to gather that information will enable it to target its marketing in such a way as to drive up drug costs unfairly and unreasonably. The MMC's evidence flatly contradicts that. Will the Minister explain why he does not agree with the MMC's conclusions? I hope that he will take on board both the concern and the detail of amendment No. 285.
Sir George Young (North-West Hampshire): I have added my name to amendment No. 285 and I wish to speak briefly in support of this group of amendments. From the debates this morning and this afternoon it is clear that we have been talking about two sorts of patient information. One is information about the individual patient; the other is aggregated or anonymised data about more than one patient.
I have no difficulty with the Minister's arguments about protecting the confidentiality of the individual patient, although some of the powers may have gone slightly wider than was necessary. Where I have difficulty is with what the Minister is seeking to do with anonymised or aggregated data. The amendments seek to narrow the definition to focus on the first set rather than the second. Our concern is that the Government are using a clause on protecting the confidentiality of the patient to do something totally different.
The notes on clauses explaining why the Government need the powers on anonymised data are rather vague. There is one reference to the public interest. However, in our debate this morning, the Minister gave two reasons for having a broader definition rather than the narrow one in the amendmentsone, to protect the financial interests of the NHS and the other to protect GPs from pressures. I am concerned about both those reasons.
The law on anonymised data is complex. One of the key legal cases is appropriately X v. Y ormore illuminatinglyX v. Y and others, which dates from 1988. The Minister needs to explain why he wants to use this clause for the much broader purpose. We have heard about the court case that was lost on appeal or on review. The Government seem now to be trying to change the law so that it will do what they tried to do before and we need to know why the Minister does not want the use of anonymised data.
Let us envisage a GP's practice that, for whatever reason, is either prescribing out-of-date medicine or, unlike other GPs, is not prescribing some new medicine. As I understand, anonymised data can enable the pharmaceutical industry to draw to the attention of the individual GP the fact that his prescribing practice is out of line. This information is called patient information but it is not really patient information at all. It is GP information. It is about the prescribing habits of the GPs and it is smuggled in under a clause dealing with patient information. I do not see anything wrong with the pharmaceutical industry using anonymised data to target particular GPs and bring to their attention information about their products. It could alert GPs about inappropriate prescribing.
However, I am unhappy about the notion that GPs need to be protected from pressure. The Minister wants to impose his judgment over that of the GPs as to what sort of advertising should reach them. It strikes me that that is excessively paternalistic and almost amounts to censorship with the Department imposing its judgment on the market in order to decide what information should reach the GPs. I am not sure that that is appropriate.
I was interested to see, Mr. Maxton, that the Treasury, in its review of Government information, has urged Government Departments to collaborate with private sector information intermediaries. In effect, that is exactly what this information under discussion is. The blunt question that I ask the Minister is whether he wants to use the powers in the clause to overturn the decision of the courts that went against him some time ago, and whether it is his intention to stop the collection of anonymised data and its use for the purposes that I have just outlined, using those powers. If that is what he wants to do, that would be an abuse of power because these powers should not be in this clause at all. I hope he will reassure the Committee that that is not his intention and that anonymised data that the pharmaceutical companies also pass on to patient organisations and medical research oganisations would be allowed to continue. I hope that he is not seeking to change a practice that has been going on for some time and that many people regard as inoffensive and even of potential benefit to patients and to the NHS.