Personal information, research and the public

Patient records and personal data must be used in ways that are acceptable to patients and the public. Establishing public confidence in research using personal information is crucial.

The UK Clinical Research Collaboration, of which the Trust is a partner, has developed a booklet called 'Your Health Records Save Lives'. This explains why access to health data is so important, how the data are used and the safeguards that exist to ensure the data are used responsibly. The booklet seeks to build on existing support for the use of personal data in research and address concerns, such as those around data security. This booklet will be sent to more than half of the GP surgeries across England, Wales and Scotland in 2011 and can be downloaded below.

Two recent reports on public attitudes to the use of personal data in research, commissioned by the Wellcome Trust and the Medical Research Council and carried out by the University of Surrey and Ipsos MORI respectively, indicated that people are willing to provide their personal data for research if they know why it is needed and have confidence in the integrity and confidentiality of the research process. However, the reports also uncovered "scepticism about guarantees of anonymity, based on people's experiences in their everyday lives of anonymity and confidentiality being breached through error, deliberate intrusion or lack of care."

Wellcome Trust, Gibbs Building, 215 Euston Road, London NW1 2BE, UK T:+44 (0)20 7611 8888