Patient involvement in research: guidance and consultation

28 July 2009

Major UK medical research charity the Wellcome Trust recently released new guidelines for primary care practitioners on the use of patient data in research, developed following a national meeting of GPs, researchers and patient groups to discuss this issue last year. Towards Consensus for Best Practice: Use of patient records from general practice for research proposes that:
  • Patient confidentiality and privacy must be safeguarded
  • GPs and healthcare professionals should play the role of patient advocate
  • Public awareness and understanding of the use of records in research should be improved
The guidelines cover the use of anonymised, coded and identifiable data from patient records and include recommendations on how to identify and approach potential research participants and ensure they receive appropriate information to allow them to make an informed choice about whether or not to participate. They have been endorsed by the British Medical Association (BMA) and the Royal College of General Practitioners (RCGP). BMA Head of Science and Ethics Dr Vivienne Nathanson commented: "The first priority of GPs must be to deliver high-quality healthcare. But they must also protect patients if their records are to be used in research and ensure that the confidentiality of patient data is safe and secure at all times" (see press release).
Meanwhile, the UK General Medical Council (GMC) has launched a new consultation on two pieces of draft guidance for doctors on research, Good practice in research and Consent to research, intended to update existing guidance Research: the role and responsibility of doctors (2002).The consultation is open ‘anyone with an interest in research’ and closes on 25th September 2009.

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