Memorandum by the General Medical Council |
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.
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.
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
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.
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 askedeven 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 careand
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
(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
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
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
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:
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