BMA vote favours "opt-in" model for care.data
Vote unlikely to change NHS England's preferred "opt-out" policy as doctors unite against direction of scheme; hybrid consent model under consideration
A British Medical Association (BMA) vote favouring the adoption of an "opt-in" model for NHS England's care.data scheme is unlikely to change the project's direction, yet will provide GPs with a mandate to oppose the current opt-out system, healthcare professionals have claimed.
Delegates at the BMA's Annual Representative Meeting in Harrogate yesterday voted in favour of a motion requiring patients to "opt-in" to have their information shared through care.data, rather than the "opt-out" model favoured by NHS England.
Under an "opt-in" scheme, patients would have to give their consent for details from their health records to be shared by the NHS. By contrast, an "opt-out" scheme assumes a patient consents to having personal information shared through care.data unless they have expressly asked to be removed from the system.
Dr Neil Bhatia, GP and Caldicott Guardian for the Oaklands Practice in Yateley, Hampshire, has today welcomed the outcome of the BMA vote, claiming it will provide doctors with the authority to collectively oppose the "opt-out" model for care.data on the basis of privacy concerns.
Originally scheduled to launch in April this year, the care.data scheme is designed to share details of NHS patients' medical records for the purposes of research. The scheme's launch has since been delayed until the autumn following a number of concerns raised by both patients' and doctors' groups about the nature of organisations who could potentially access the information.
Both NHS England and the Health and Social Care Information Centre (HSCIC) have maintained they continue to listen to the views of patients and GPs over concerns around how care.data will function and provide information.
Dr Bhatia added that the BMA vote this week would serve to drive debate on the possible alternatives to requiring the public to opt-out of having their personal data being included in the scheme, but questioned whether it would directly impact government policy.
"I am under no assumption that care.data will change as a result of this vote and despite the decision to delay care.data, the whole thing will start as planned in the autumn," he said.
Bhatia added that many doctors felt that allowing patients to "opt-in" to share information on care.data was the right way forward for the government, which would be required to "make the effort" to then educate and clearly advise the public on how information would be used and who would see it.
He said that alternatives to the "opt-out" system, such as a so-called "hybrid consent" proposal were also being considered by independent campaign groups in order to allow universal use of patient data for research clearly defined as being in the public interest.
Under the proposal any additional research requiring NHS England's care.data advocacy would require the express consent of patients to be used.
In a statement released following yesterday's vote, the BMA said that it was "supportive" of the principle behind care.data to better use health information for improving healthcare services.
"However, doctors are not convinced that the care.data system in its current form meets the highest possible standard of confidentiality and, as such, risks compromising the trust on which the patient doctor relationship is based," the statement read.
"Doctors believe the government needs to do more to increase public awareness around patients' right to decide how, and for what purposes, their records could be used, and whether or not they want information to be passed to secondary sources. For this reason, doctors have voted to support an opt-in, rather than an opt-out system. Doctors also believe additional safeguards are needed to ensure data is not identifiable and that data should only be used for the purpose of improving patient care, and never be sold for profit."
NHS England's chief data officer has meanwhile warned that any amendments to care.data requiring patients to "opt in" to share their medical information is likely to exclude some of the most vulnerable people from potentially benefitting from the project.
Dr Geraint Lewis said that the possible exclusion of some of the most vulnerable patient groups like the elderly from care.data would limit better understanding of their care.
"If we don't understand how they are being cared for then we can't provide the services and resources they need," he said.
Lewis added: "the most important thing is that we get this right on behalf of patients and the public as it will make care better and safer."
"People need to feel confident that their privacy is being respected and their information is only used to improve the NHS and social care in England. We will only proceed when we are sure the process is right," he said.
Speaking yesterday, NHS England's national director for patients and information, Tim Kelsey, said that health information provided through the care.data scheme was vital to improve and sustain health services across the country.
He argued that healthcare bodies could not listen and address patient needs without care.data to assist in the decision making process.