Select Committee on Science and Technology Written Evidence


Memorandum by the General Medical Council

SUMMARY

  The monitoring and surveillance of infectious disease in the UK is vital in protecting the public health and relies on information from patients' records.

  Patients value confidentiality and control over how information about themselves is used.

  It is essential that we respect patients rights and, at the same time, ensure that good quality data is available for public health protection. This can be done, but it will require changes in the way doctors practise.

INTRODUCTION

  Over the last two years there has been considerable discussion about the GMC's guidance Confidentiality: Protecting and Providing Information at www.gmc-uk.org/standards

  The question whether sufficient information is available for public health surveillance may be raised during this inquiry. The notes which follow set out the GMC's guidance and views on disclosure of identifiable data.

GMC GUIDANCE

  The GMC recognises the vital role played by monitoring and surveillance systems in protecting the public health. Our guidance makes this clear.

  "Professional organisations and government regulatory bodies which monitor the public health… rely on information from patients' records for their effectiveness in safeguarding the public health . . . You must co-operate by providing relevant information wherever possible. (Confidentiality: Protecting and Providing Information, paragraph 22, GMC 2000)."

  But this does not diminish the importance of confidentiality of health information and the legal and ethical obligations to inform patients and seek their consent for disclosure of their health data.

  Patients place a high value on a confidential relationship with their doctors. Health records contain information about lifestyle, relationships, parentage and illness. Some people share information with their doctors that they have not even told their closest family members. There is a high (and at times unfounded) trust that the information held in health records is accessible only to those providing care.

  Research[62] continues to show that patients want control over how information about them is used, particularly where the purpose is not directly for the provision of their care. A small minority (perhaps 10 per cent) would withhold consent to disclosure of records for all purposes not directly related to care. A majority would like to be asked—even if they were likely to agree to a disclosure.

  Maintaining trust, so that patients are frank with their doctors, is essential to the provision of good care—and in the longer term to health surveillance and infection control and to other research. Incomplete or inaccurate records, born of concerns about how information will be used and disseminated, will not provide a secure basis for surveillance or monitoring, research, audit or planning.

Ethical and legal requirements

  The law and professional guidance protects patient confidentiality. In particular the common law establishes that information may not be disclosed unless:

    (a)  The patient consents.

    (b)  The law requires disclosure (or a judge orders it).

    (c)  There is an overriding public interest in the disclosure.

  Information from which patients cannot be identified can also be used without patients' consent, for NHS or other public health purposes.

  Our guidance reflects these requirements.

  Some disclosures are required by law, for example, the Public Health (Control of Disease) Act 1984 and SI 1988 No 1546 require the notification of specified diseases and food poisoning incidents.

  But where there is no legal requirement to disclose, consent should be obtained for the disclosure of records, or records should be anonymised. We understand the difficulties which this entails, since systems are not yet in place to support this; some records are maintained on paper and cannot easily be anonymised; leaflets and other information for patients is not readily available; sometimes computer systems do not enable patients to exercise choice about disclosures.

  Where it is not practicable to obtain consent and data cannot be anonymised (or anonymised data will not serve the purpose, for example where action must be taken following the out-break of a communicable disease) consideration may be given to disclosure in the "public interest". Doctors considering such disclosures must weigh the possible harm in overriding the patient's privacy interest, and the harm to the overall trust between doctors and patients, against the benefits which are likely to arise from the release of the information.

  Ultimately the "public interest" can be determined only by the courts. Clearly this may be considerable stress on doctors and others who have to assess, in each case, whether a disclosure would meet this legal test. The problem is addressed in the short and medium term by the regulations in England and Wales which the Secretary of State may make under the Health and Social Care Act 2002 to enable disclosures to be made without consent without being in breach of the common law. The Patient Information Advisory Group considers applications for such disclosures, and considers the stated value of the collection of data, against the problems of anonymising data, or of seeking consent. PIAG has approved an application from PHLS covering its work with identifiable data.

  Further information is available from the GMC. Please contact Jane O'Brien, Head of Standards Section, GMC, 178 Great Portland Street, London W1W 5JE. Tel: 020 7915 3567, e-mail: [email protected]

October 2002



62   Share with care: People's Views on Consent and Confidentiality; NHSIA October 2002; BioBank UK: A Question of Trust: A consultation exploring and addressing questions of public trust Report prepared for The Medical Research Council and The Wellcome Trust March 2002. The Medical Research Council. Public Perceptions of the Collection of Human Biological Samples, 2002, What do the public think about the use of their health information?. An interim report by Sheffield University School of Health and Related Research, September 2001 Sheffield. Back


 
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