NHS England has for the first time discussed the possible benefits of moving to a system where patients opt-in to signal consent for their data to be shared in the controversial care.data scheme, HSJ understands.
Officials from the national body have met with clinical and patient groups in the past few days to hear their concerns over the implementation of the project.
Under the proposed system, which was recently paused by NHS England for six months, it would be assumed that patients consented for their data to be passed on unless they explicitly opted out. This resulted in concern from patients, GPs and privacy groups.
Among the organisations involved in the discussions have been the British Medical Association, Royal College of General Practitioners and the patients’ umbrella organisation National Voices.
HSJ also understands Tim Kelsey, NHS England’s director for patients and information, has been prepared to discuss the issue of allowing GPs to be indemnified against legal action from patients whose data is uploaded to a central database under the data sharing initiative.
An NHS England source told HSJ that the body would need to better engage with GPs to find out their needs during the six-month pause period.
He said: “What do [GPs] want? What are the issues of agreement? If GPs want to look into the ‘opt-in’ issue we can have that discussion. It won’t be a negotiation, but we are listening. This is the first time is has been formally raised with us.”
The “opt-in” principle is favoured by a section of the GP community.
National Voices chief executive Jeremy Taylor, who was present at a meeting yesterday between Mr Kelsey and patient groups and charities, described the session as “the first conversation of its kind” bringing the NHS England figure together with stakeholders.
He said: “There was a discussion over whether there is a need for a stronger statutory basis for care.data and the protections that need to be put in place [around it]. There were some views in the meeting that the Health and Social Care Act was not sufficient [to layout a governance system] and there needs to be a legislative underpinning.”
He added that some patient group representatives believed further legislation would be necessary whereas others disagreed with this view.
Mr Taylor also said that other points of discussion included appropriate mechanisms for oversight and sanctions for those who breach data rules.
Chaand Nagpaul, chair of the British Medical Association’s GPs committee, told the Commons health committee of MPs on Tuesday that GPs, who are tasked with uploading patient data under the 2012 Health Act, should be indemnified against potential legal action from patients who believed their data had been shared without their permission.
Dr Nagpaul said that GPs were effectively trapped between conflicting legal obligations. They must upload patient data to the Health and Social Care Information Centre, if NHS England requests it, “without consulting their patients” under the Health Act.
He said this role conflicted with their duty the 1998 Data Protection Act to inform their patients when their data is shared.
The NHS England source said: “With regards to indemnity for GPs, we are considering whether we need to do it.”
He added: “My other concern is that… patients continue to have confidence about the security and confidentiality of their data.”
Separately, health secretary Jeremy Hunt is to hold a meeting today to discuss the care.data project.