Should researchers be able to access my patient records?
The translation of patients' written medical records in GP
surgeries into electronic documents, summaries of which that can be
held in a national central database, offer real opportunities to
Patient records could be used to identify patients to take part
in clinical trials or in epidemiological research assessing the
causes and spread of disease.
However, the possibility raises similar concerns to those raised
by biological databanks, which centre around anonymity and
protection of data against unauthorised access.
To find out what the public thinks about
providing personal medical data for research, both the
MRC and Wellcome Trust conducted polls in 2007. The findings
indicated that on the whole people were willing to do so, if they
understood why it was wanted and had confidence in the integrity of
the research process. There was however also some "scepticism about
guarantees of anonymity, based on people's experiences in their
everyday lives of anonymity and confidentiality being
To help develop guidance for healthcare
professionals on the use of anonymised, coded and identifiable data
from patient records in research, the Trust held a
national consensus meeting for GPs, researchers and patient
groups at its Euston Road headquarters in 2008. The results were
compiled in a
report endorsed by the British Medical Association [PDF], Royal
College of General Practitioners and other UK health
Data Sharing Review, undertaken by Richard Thomas, Information
Commissioner, and Mark Walport, Director of the Wellcome Trust,
considered the use and sharing of personal data in for research and
report [PDF], published in July 2008, includes a number of
recommendations, including the proposal that safe havens -
designated electronic areas that provide security for confidential
data protected by trusted custodians ('honest brokers') - should be
designed. The report also proposed that the NHS should develop a
system to allow approved researchers to work with healthcare
providers to identify potential participants in clinical studies.
The Government response, published in 24 November 2008, fully
endorsed these recommendations.