Facilitator Handbook 2005 - PRIMIS

PRIMIS Facilitator Handbook
Your Local PRIMIS Scheme
There are purposes, other than for delivering personal care and treatment, for which it is
legitimate to use personal information about patients, provided that patients in general are
made aware that personal information may be used to prepare statistics to support such
purposes. These purposes include:
• assuring and improving the quality of care and treatment (e.g. through clinical audit)
• monitoring and improving public health
• managing and planning services
• statistical analysis and medical or health services research to support any of the
above.
Although the data extracted will not in itself identify individual patients, it will still be necessary
to avoid ill-considered aggregation of data which may threaten the confidentiality of the
individual. This is especially important with rare conditions involving small numbers of patients,
or conditions associated with recognisable characteristics, or where patients with combinations
of conditions are being selected. Both participating GPs and the data quality improvement
scheme must be alert to these potential problems and seek to prevent them.
Aggregating selective information about a small number of patients may not always safeguard
confidentiality adequately. Those with control of the information must make a judgement, taking
into account clinical and other relevant considerations, as to the point at which there is no
perceptible risk of patient identities being discovered from the aggregated material, either by
itself or in combination with other information available to, or potentially accessible by,
recipients of the information.
Confidentiality is an essential component of the clinical consultation in the provision of health
care. The clinical professions have stringent requirements with regard to confidentiality in their
codes of ethics. The NHS Confidentiality Code of Practice is a guide to required practice, for
those who work within or under contract to NHS organisations concerning confidentiality and
patients’ consent to using their health records.
A copy of the NHS Confidentiality Code of Practice or further information about the ways in
which patient information is used in the NHS, and the need to ensure confidentiality, can be
obtained from:
www.dh.gov.uk/PolicyAndGuidance/InformationPolicy/PatientConfidentialityAndCaldicottGuardians/fs/en
Agreements between the data quality improvement scheme and each practice
The responsibilities of the practices and the managers of the data quality improvement scheme
need to be clarified by a formal agreement. A skeleton agreement is provided in the PRIMIS
Guidelines. Such agreements are necessary for a variety of reasons, including the need to
fulfil the requirements of confidentiality.
Data must not be extracted which go beyond the terms of the agreement between the
practices and the scheme managers, nor must data be used for purposes outside the formal
agreement. Any new uses may need special agreements and due consideration of the
confidentiality aspects. In the scenario where a practice contributes to a national data quality
improvement scheme, such as the PRIMIS Comparative Analysis Service, but is also part of a
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