The question of whether patients opt into having their electronic records shared or have to specifically request to opt out of the system probably makes no difference to the patient either way, claims an editorial in today’s British Medical Journal.
Patient representative Jan Wilkinson, responding to a point-counterpoint argument about whether it is better for patients to request exemption from having their electronic record shared or to assume consent, said that patients would really only be interested in the end result.
"From the patient perspective, relatively few factors will ultimately matter in the process of establishing the NHS care record service," she writes.
"It is easy to spot that the end results of opting out and opting in look remarkably similar from the patient’s perspective. The care record and its benefits are the same; the ultimate security and safeguards are the same."
The consent model for electronic health records and demographic data has been a controversial topic over the life of the National Programme for IT. Last week’s BMA local medical committees’ meeting voted to support a system where patients would need to request for their medical and demographic details to be added into the NHS Care Records Service – in opposition to the model proposed by Connecting for Health, in which patients will need to request opt out.
The case for opting out was put by Nigel Watson, chief executive of Wessex Local Medical Committees, who cited the example of Hampshire and Isle of Wight SHA’s interim electronic record system.
The 1.3m patients who were to have their details, held by their GPs, added to the system, were informed by post. A total of 1,150 called to specifically opt out of the system. Restrictions had been put in place as to who could access the specific details of electronic records, with unauthorised access (such as in the case of emergency) needing explanation.
Watson said: "The opt-out model allows patients to benefit from earlier availability of information, reduces the workload on hard pressed services, and cuts the bureaucracy for both practices and patients.
"I believe we should adopt an opt-out approach for contributing information to the NHS care record service, but obtain consent, or have a legitimate clinical relationshop with the patient, to access the clinical records."
John Halamka, chief information officer at Harvard Medical School, offered the alternative perspective, saying that there were certain risks to adopting an opt-out model. "If the regional index is compromised, information on all instituations would be leaked. This could cause much anxiety to patients if they had not consented to that information being shared or been properly informed."
"With an opt-out approach, patients have only one choice during a clinical visit-either consent to enable a clinician to query records at all sites, or deny consent," he said. "We have only one opportunity to build a healthcare information superhighway that patients and providers can trust. We should let the patients decide if they want to drive on it."
Wilkinson agreed with Watson, adding that if anything, patients are more likely to go for the path of least resistance – the opt-out model.
Although there were a number of people who would appreciate opting out – public figures and celebrities, and those who would see themselves at risk of their sensitive medical data being misused – it would be far easier and beneficial for consent to be implied.
"It is difficult to image why most patients would vote for or support the opt-in model. They are more likely to wonder what all the fuss is about and to choose the more practical opt-out process."
BMJ article [subscription needed]