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Just one in three aware of new patient data system

30/05/2008

Less than a third of people living in areas piloting an electronic patient record system have heard about the programme, a new study claims.

Researchers from the University College London (UCL) found that seven in ten people in three trial areas were unaware of the NHS Summary Care Record (SCR).

The SCR is an electronic summary of a patient's medical record accessible to NHS staff via the internet and it is due to be rolled out nationwide along with HealthSpace, an internet-based personal health organiser from which patients can view their own SCR.

People unhappy with their data being stored in this way will have to opt out of the system, with the system presuming other people have given their implicit, informed consent.

The UCL team carried out 103 interviews and held seven focus groups in three pilot areas, focussing particularly on people with low health literacy, potentially stigmatising conditions or those with difficulty accessing healthcare.

Even though nearly all of the local population had received a letter informing them about the SCR being introduced in their area, most were not actually aware of either the SCR or HealthSpace.

Many wrongly believed that electronic records were already shared between health professionals, according to the findings published in the British Medical Journal (BMJ).

Two-thirds of people were positive about the SCR and happy not to opt out but very few were totally in favour of the idea.

The researchers found that for most people the decision about whether to have an SCR was dependent on their own personal experience and involved a process of weighing the positive against the negative.

"These findings align with those of other surveys and are unsurprising given the inherent complexity and rapid development of electronic records in the NHS," the researchers conclude.

"In a world in which health care is supported by technologies that are beyond the awareness of most and the comprehension of some, 'informed consent' might have unstable foundations - a finding which questions the adequacy of existing legislation about consent for the creation of, and access to, electronic patient records more generally."