Data confidentiality and data handling in research: a workshop report

Background: Medical records are not only a vital tool for the delivery of health care to individual patients but also hold information with significant potential for research. However, patient records contain personal information, and some medical details may be particularly sensitive. The Wellcome Trust produced a draft consensus statement for the use of patient data in research as a result of discussions with GPs, researchers and patient groups. The purpose of this document, produced in May 2008, was to provide guidelines for best practice when general practice records are used for research.

Method: The recommendations made in the consensus statement were discussed by academic primary care researchers, National Health Service (NHS) research and development (R and D) department staff, and UK primary care research network managers at a workshop held at the Society for Academic Primary Care (SAPC) Annual Conference 2008 in Galway.

Outputs: Workshop delegates were largely supportive of the recommendations made in the draft consensus document. Key recommendations included: a campaign at a national and local level highlighting the need to use personal patient records to inform research; standard operating procedures to ensure clearly defined processes are being followed; and the requirement for all patient data to be treated as confidential.