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Consent is the key to patient record access

Anything less than full patient and GP consent for access by researchers to identifiable records will damage the doctor/patient relationship, and medical education.

Anything less than full patient and GP consent for access by researchers to identifiable records will damage the doctor/patient relationship, and medical education.



We live in an era of evidence-based medicine. In the consultation room, studies and statistics are nudging aside instinct and hunch. Almost every line in every set of guidelines can be traced back to clinical data and patient information.

So when medical researchers plead for access to the planned national database of electronic patient records, the advantages at least seem clear-cut. Electronic records will provide a wealth of new information at the click of a mouse, and the reward – eventually at least – should be new data and better guidelines.

But what about the drawbacks? Here the picture is far sketchier, since details of how the Secondary Uses Service (SUS) will work remain vague. The level of concern rises with the degree of access researchers might be granted. Most GPs would probably accept access by researchers to fully anonymised records.

Access to pseudonymised data – where each record is given an individual patient code - presents a few more problems. Much would depend on how it was done and if it could be shown to work.

Research organisations, though, want to go a whole lot further than that, as responses to Connecting for Health's consultation on the SUS make clear. The hugely influential Wellcome Trust – the world's second largest medical research charity - is pushing for researchers to have access to fully identifiable patient data, without the need to obtain consent.

What's more, the trust believes suitably qualified researchers should be able to search patient records to identify patients eligible for trials, and contact those patients directly.

Now a system granting access to identifiable patient data without consent might well be perfect for efficient generation of research results, but it is a nightmare scenario for GPs.

Patients share information with their doctors on the assumption that it won't go beyond the consulting room. Imagine if, on the basis of that private information, a researcher could contact a patient out of the blue and ask them to participate in a research study. It would, as the RCGP argued in its consultation response, be a fundamental breach of patient trust.

GPs have successfully argued that patient consent should be placed at the core of the Government's plans for electronic records – and it will now be required each time a record is accessed by a health professional. The requirements for consent when records are accessed by researchers need to be every bit as robust.

Anything less will not only damage the relationship between doctor and patient, but also destroy trust in medical research.

Pulse editorial comment - consent is the key to patient record access

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