Select Committee on Science and Technology First Report



31. Committee's Report identified cancer registration as a key issue. Registration of cancer patients from the point of diagnosis enables researchers to know the number of people contracting cancer, the form of the disease and death and survival rates. Cancer registries, funded by the DoH, collate and analyse this information for publication by the Office for National Statistics (ONS). Registration is not anonymous as personal identifiers are necessary to cross-check data; routine information output, such as that produced by the ONS, is anonymised. When the Committee's Report was written, the greatest threat to cancer registration in the UK appeared to be under-funding. The Data Protection Act 1998 had also led to some anomalies in the reporting of cancer cases. The Report recommended that "the Government should introduce legislation to make the registration of cancer a legal requirement, both to ensure the completeness of cancer registry data and to ensure access to those data for legitimate research purposes".[63]


32. In September 2000, before the Government Reply was published, the General Medical Council revised its guidelines on patient confidentiality to include the need to seek explicit patient consent before passing on data. Paragraph 27 of the Guidance on Confidentiality states that "the automatic transfer of personal information to a registry, whether by electronic or other means, before informing the patient that the information will be passed on, is unacceptable save in the most exceptional circumstances". This Guidance was condemned by the cancer research community. A statement in October 2000 by the UK Association of Cancer Registries (UKACR) said that the new GMC Guidance would "in effect destroy the population-based coverage of cancer registries. The hypothetical additional safeguards introduced by explicit consent are likely to be negligible in comparison with the potential loss to the entire community and to future cancer patients if this population [data]base becomes compromised".[64] In response to the outcry, the GMC issued a one-year moratorium for cancer registration only on their Guidance in November 2000.


33. The Government Reply published in September 2000 responded positively to the Committee's concerns. The Government undertook to "set out plans to strengthen cancer registries early next year [2001]".[65] It concluded "the Government is determined to secure the future of cancer registration and will take the necessary action to ensure this".[66] The Government undertook to provide a legislative solution through the Health and Social Care Bill. On 11 January 2001, when the Committee's Report was debated in the House, the Parliamentary Under-Secretary of State for Health acknowledged the importance of these concerns. In May 2001, the Health and Social Care Act came into force. Section 60 of that Act enables regulations to be made to enable the passing on of confidential patient information without explicit consent. Section 60 states:

 "The Secretary of State may by regulations make such provision for and in connection with requiring or regulating the processing of prescribed patient information for medical purposes as he considers necessary or expedient -

(a) in the interests of improving patient care, or

(b) in the public interest".[67]

It also provides for annual review of any such regulations.

34. Section 61 of the Health and Social Care Act provides that the Secretary of State should set up a Patient Information Advisory Group (PIAG) "as soon as reasonably practicable". He must consult this body before making any regulations under Section 60.[68] The fourteen members of PIAG did not meet until December 2001[69] (a month after the GMC moratorium was due to expire). Sir John Pattison told us "the delay is due to the fact of going through a proper procedure of constituting the membership of a committee, inviting a number of bodies to make suggestions about who should be considered for membership and inviting applications for membership, and then going through a Nolan procedure, making recommendations to Ministers, getting their agreement, and then holding up the announcement until we had actually heard from everybody who was going to be on the committee that they would actually serve as members".[70] The Department of Health expects the draft Regulations to be laid before Parliament in February 2002. The Minister told us that the Regulations under the Health and Social Care Act were intended "to ensure that we would put cancer registries on a secure footing because, clearly, the information that they gather is essential in terms of our monitoring progress that we make on cancer but also having just that database of information is very powerful too".[71] The Department of Health expected the Regulations to be laid before Parliament in February 2002. We note that this was not achieved. We await the forthcoming Regulations with impatience.

35. The GMC moratorium was due to expire in November 2001: we understand it has been extended until the passing of the Regulations. Interim advice sent by the GMC to those seeking information in the meantime states "we fully support the work of cancer registries and of other research, epidemiology and surveillance, which is vital in protecting and enhancing the public health. We have accepted assurances from the UK Health Departments that systems for protecting patient confidentiality will be implemented as soon as practicable. In light of those assurances, we have agreed that the practical difficulties which doctors face in seeking consent to disclosures ahead of the implementation of new systems will be taken into account if complaints about disclosures are made to the GMC".[72] T his does little to reassure those working in the field that it remains permissible to supply data to cancer registries and it fails to mention that the moratorium has been extended. The GMC intends to publish its revised guidance to coincide with the implementation of the first Regulations. The GMC's Guidance on Confidentiality was very ill-advised and has been highly damaging to information gathering for medical research and cancer registration.

36. The UKACR told us in detail of their dissatisfaction at the situation: "progress since the Act was passed has been frustratingly slow, with a lack of clear guidance from the Information Policy Unit at the Department of Health. We have on a number of occasions been given conflicting advice on how to proceed".[73] Sir Paul Nurse told us "what I am aware of is that there is quite a lot of confusion out there and it is not quite clear what the present situation in fact is"[74]. Clinicians also expressed concern about the effect of both the GMC guidance and the legislative delay on research. The Society of Academic and Research Surgery said "it is incomprehensible to us how the situation with respect to the GMC and Health and Social Care Act has been allowed to occur. [It] has rendered even simple retrospective audit impossible, let alone substantive cancer research based on retrospective data. This has led to the UK becoming a far less attractive location for any form of cancer research than it has been in the past".[75] Professor Gordon McVie, of the Cancer Research Campaign, described the situation as "verging on chaos", and added "this is one of the single biggest threats to the whole business of evaluation of whether either cancer research works or cancer care works. It is as simple as that, it could be devastating".[76]

37. Professor Mike Richards dismissed worries that healthcare trusts were not able to give enough information to cancer registries. He assured us that 'I do not think that we will lose the information, even if [trusts are not contributing to registries], because it is still being held by the trusts'.[77] He thought that once the Regulations had been passed, any information held back could then be passed on to the registries. The Department does not seem to appreciate the depth of concern about problems caused by the delay and confusions for cancer registration and cancer research, nor the urgency required in seeking solutions to these problems. The delay by the Department of Health in setting up the Patients' Information Advisory Group and in bringing forward draft legislation to address the situation of cancer registration, is deeply regrettable. Unless legislation is put in place swiftly, medical research will be irretrievably damaged.

63   HC 332, para 112 Back

64   A Statement by the UK Association of Cancer Registries (UKACR) on the General Medical Council (GMC) Guidance on Confidentiality, 2 October 2000, para 5 Back

65   Cm 4928, para 81 Back

66   Cm 4928, para 83, see also Cancer Plan, para 6.25 Back

67   Section 60, Health and Social Care Act 2001 Back

68   Section 61, Health and Social Care Act 2001 Back

69   Qs 20-21 Back

70   Q 23 Back

71   Q 188 Back

72   Ev 68 Back

73   Ev 53 Back

74   Q 139 Back

75   Ev 57 Back

76   Q 139 Back

77   Q 25 Back

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