Should patients be able to control their own records?

Every general practice in England will have to offer patients online access to their care records by 2015, according to the government’s information strategy for the NHS published in May.1 Currently only 1% do so. As the Department of Health acknowledges, this represents “a challenge to the culture and practices of some health and care organisations and professionals.”

But advocates of patient access to records now want to go further. They want patients to control their records, with the right to decide who may access them. As the information record is about the patient, the record is his or her property, they argue. Patient controlled records bring extensive benefits, they believe: better informed, more engaged patients; a more mature doctor-patient relationship; shorter consultations; fewer errors; and a means of integrating services—in short, that holy grail of modern healthcare, improved outcomes at lower cost.

This may sound counterintuitive to many doctors. Records could contain information that might alarm or even harm a patient, they respond. They may be written in jargon or—for the sake of clarity—in a frank way that patients find offensive or misunderstand. Patients might deluge doctors with trivial inquiries. Although the BMA believes that patients should have access to their records, it remains concerned about security.

Historically, medical records have been regarded as the property of clinicians or their institution. And although patients in the United Kingdom have had the right to read their paper records since the 1990s, few choose to do so. But accessing records online is much easier: it may stimulate demand for access and, with it, control.