Access to records is essential - but so is confidence of patients
In response to your article 'Researchers want access to patient data without consent' (pulsetoday.co.uk/news), I would like to clarify the Wellcome Trust's position.
Access to electronic patient records is invaluable to help facilitate medical research that could lead to improvements in the lives of many thousands of people.
However, the Wellcome Trust recognises that these benefits will only be achieved if the public and doctors have confidence that personal information will be handled confidentially and securely.
People currently have very low awareness of how medical records are used beyond the direct provision of care.
We believe it is crucial that all NHS patients understand how their information may be used, and why research using such data is important.
Publicity material should also make clear the safeguards which have been put in place to protect privacy, and make it clear that patients can opt-out of the use of their identifiable data in research if they wish.
We do recognise that personal information contained in patient records is potentially both sensitive and private.
Clear mechanisms of accreditation and accountability are crucial to ensure that such information is safeguarded. We have been working with GPs, researchers and patient groups to develop guidance for best practice.
If patients and doctors can trust the processes used for accessing information, everyone will be able to benefit from the significant research potential of medical records.
We welcome the Connecting for Health consultation on this important issue. Our full response is available at:
http://www.wellcome.ac.uk/About-us/Policy/Consultation-responses/index.htm Dr. Mark Walport
Dr. Mark Walport
Director, The Wellcome Trust