Towards Consensus for Best Practice: Use of patient records from general practice for research
Patient records in general practice surgeries are a unique resource that can provide evidence to help medical researchers improve their understanding of disease, develop potential new treatments and improve patient care. But patient information is both sensitive and private, and the security of personal data must be safeguarded.
There is considerable uncertainty about the processes that should be used when information from patient records is required for research. The best practice guidance described in this document was developed during a national consensus meeting held at the Wellcome Trust in 2008 with GPs, researchers and patient groups. It is intended as the first step in a process to ensure that patients and GPs have confidence in the processes used to access patient information.
The guidance has been endorsed by:
- the British Medical Association
- the Royal College of General Practitioners
- the HODS group (heads of departments of general practice and primary care in the UK and Ireland)
- the Health Improvement Network (THIN)
- QResearch
- the Research Capability Programme in NHS Connecting for Health/National Institute for Health Research
- the Society for Academic Primary Care
- the Wellcome Trust.
The guidance is based on three overarching principles:
- the overriding importance of safeguarding patient confidentiality and privacy and the need to clearly define the processes and procedures for the use of data
- that GPs and healthcare professionals should play the role of patient's advocate
- the need to improve public awareness and understanding about the use of patient records in research.
The report, which builds on existing examples of best practice, includes guidelines on the use of anonymised, coded and identifiable data from patient records, and the use of patient records as the starting point to identify potential participants to take part in a research study.It is primarily intended for GPs and responsible healthcare professionals, but will also be useful to researchers, patient groups, health informatics professionals and advisory bodies.
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