I was a member of the Wellcome Trust working working group, and the work aided and referred to the UKbiobank project.
The Wellcome Trust workgroup considered the fact that a number of reports had considered the use of personal information in research, but there remained uncertainty about access to general practice records for research. A consensus meeting was held in May 2008 with GPs, researchers and patient groups to develop guidance for best practice and the final published findings from the working group summarised the agreement reached; it was endorsed by the Royal College of General Practice, and it was considered that It should apply to all researchers using patient data, whether academic or commercial.
Nigel Mathers, Nicola MR Perrin, Graham CM Watt Copyright and License information PMCID: PMC2573987 PMID: 19000411
Since 2006, UK Biobank’s half a million participants have been generously providing a vast amount of information about their health. UKbobank's unique biomedical database is the most comprehensive and most widely used of its kind, and provides researchers worldwide with the data, tools and support to make discoveries which otherwise wouldn’t be possible. Patient information is both sensitive and private. The general public and patients must have confidence that the security of personal information is protected, and that procedures are in place to safeguard data.
Researchers approved to work with the data can access it through our UKbiobank's secure Research Analysis Platform. Participants’ identifying information is removed before researchers can access the data. which currently hosts . Towards consensus for best practice: the use of patient records for research in general practice
Research is a core part of the NHS. Evidence is needed to improve patient care, advance understanding of disease, and evaluate interventions. Patient records offer significant potential for research and the increasing use of electronic records offers new possibilities to analyse large volumes of data.
HIFA profile: Richard Fitton is a retired family doctor - GP. Professional interests: Health literacy, patient partnership of trust and implementation of healthcare with professionals, family and public involvement in the prevention of modern lifestyle diseases, patients using access to professional records to overcome confidentiality barriers to care, patients as part of the policing of the use of their patient data Email address: richardpeterfitton7 AT gmail.com