The British Medical Association has said it would have preferred patients to be asked by their GP before information was uploaded to a central NHS data ‘spine’ under the £12.7 billion National Programme for IT.
But it said new rules that mean doctors have to ask for patients’ permission to view their care records marked “an improvement” in the system for patients and GPs, adding that it welcomed the changes.
Summary Care Records (SCRs) will contain health records of patients including a treatment history, and will be updated by doctors at each appointment. So far, 160,000 records have been created at five early adopter test regions in the UK.
“Ideally we wanted the GP during the consultation to talk to the patient, and get the patient’s consent to decide whether to upload the data in the first place,” a spokesperson at the BMA, which represents two thirds of doctors across the country, told Computerworld UK. The BMA in May called for a halt to the SCR rollout until concerns over consent were addressed.
The spokesperson said there was still a concern that the data was being uploaded automatically in the first place, unless patients actively opted out.
“I’m sure some patients will still be upset that their data is online, especially with all the news of government data disappearing,” he said. Outside of the NHS, the data of some four million people was lost by the government in the last year alone, according to a recent BBC analysis.
Under new plans announced yesterday, the NHS said the consent system has been “simplified”, so that patients can more easily opt out. Now, when patients visit their GP or a hospital, the system will be explained to them. At this point they can decide whether a doctor can see their record, and they can even opt out of the system.
But the NHS controversially stuck to its guns on the initial record creation, and patients not wanting to be part of the system will have to respond to a letter of explanation within a set time frame to prevent a record from being made on the national database.
A study of the trial SCR rollout by a government advisory group at University College London (UCL) raised legal and ethical questions over the automatic opt-in model, and the complexity of the system for patients. The trial showed a number of patients in early adopter areas had not understood documentation they had been sent explaining the records, nor how to chose who could access their data.
Professor Trisha Greenhalgh, the author of the report, said she was happy about the changes to the consent model, even though the NHS was still assuming patient consent for record creation.
She said: “The most consistent and disturbing finding from the evaluation of the SCR was concern from NHS staff, patients, professional organisations (including the British Medical Association) and civil liberties groups about the original 'implied consent' model.”
The new system “aligns much more closely with principles of good data control”, she said.
The BMA said it wanted assurance from the NHS that there would be a framework to help doctors give patients a thorough explanation of the records. “It’s about how the public information campaign works,” said the spokesperson. “We want guidance for doctors to give all the information.”
Dr Gillian Braunold, clinical director of the SCR, said: "The revised consent model gives the patient control to say yes or no and it is much simpler. The default position will be 'ask me first'. We have listened to doctors and nurses who raised concerns and we are certain we now have a model which will work across a full range of care situations."
Questions have been raised after the NHS said it was consulting the public on access to patient records for secondary uses, such as healthcare planning and research, but had not consulted nationally on doctor access to patient records. Asked by Computerworld UK why this was the case, the NHS said that ministers had determined it.
The NHS denied that comparisons could be made between decisions on the two types of access. Professor Michael Thick, chief clinical officer at Connecting for Health, the agency responsible for the national IT programme, added: "Patients, as well as clinicians, must be involved in these crucial decisions about using clinical and patient data."