GP leaders have waded into the ongoing row over the handling of care.data and its fast-looming national roll-out.
The Royal College of General Practitioners (RCGP) says it is "very concerned" that the public has not been properly informed about the data-sharing programme, and has called for a "renewed national push" by authorities to clarify to patients "the benefits of the scheme, what their rights are, and what their rights to opt out are".
Under the Care.data initiative, data from GP records will be uploaded to databases controlled by the Health and Social Care Information Centre (HSCIC), combined with hospital data, and then opened up to researchers, NHS organisations and commercial companies, though not for a profit, it maintains.
Those who support the move and wider access to these huge medical datasets believe that it will ultimately help the NHS improve the quality of care for patients, paving the way for better commissioning and unparalleled 'real world' research.
But, "the inevitable result of the failure to make the case for the scheme is the crisis of public confidence that we are now seeing", just seven weeks before the national rollout, the RCGP stressed.
"The College remains supportive of the care.data initiative in principle…however we urgently need reassurance about what plans are being made to address current GP and public concerns to restore public confidence in the scheme," said Honorary Secretary Professor Nigel Mathers.
It has called on the government and NHS England to "act immediately", otherwise "further questions will inevitably be asked about the wisdom of rushing the scheme through before the current gaps in information and awareness have been addressed".
A spokeswoman for NHS England told PharmaTimes World News "we’re absolutely committed to ensuring the public are aware of the benefits of this initiative and their rights to opt-out," but also noted that it is "an ongoing exercise of engagement".
A nationwide leaflet drop into every household is currently taking place, but she said NHS England is now "actively talking with doctor’s groups, patients and charities about how we can better and further explain this programme and people’s right to opt-out," and that it will meet again with the RCGP soon to discuss their concerns.
But earlier this week PharmaTimes reported that some GPs are opting their entire patient populations out of care.data with many unsure how the system will work, while Healthwatch has written to NHS England urging a delay the April 1 deadline and to "step up efforts to explain in plain English exactly how it will work and why it is of benefit to patients," highlighting the extent of the confusion.
Privacy issue
NHS England and the HSCIC have said that data will not be sold to insurance companies for the purposes of insurance and that confidential data can only be disclosed where allowed by the law, and that patent data will only be accessible in anonymised or ‘pseudonymised’ form.
However, strong fears over the privacy issue remain, particularly as the information will only be 'anonymised' when sold on to third parties, and many seem skeptical over to what extent the data will remain unidentifiable after leaving HSCIC.
Labour MP George Mudie reportedly said during a recent debate in parliament (as reported by computing) that he was concerned over the security implications of storing so much sensitive data in one place and that a security breach was "inevitable".
"The human cost to the patient whose identity and medical history are made public is potentially disastrous. Careers could be ended, jobs lost, insurance refused and relationships destroyed if sensitive medical facts are made public or used by private firms, other people or, indeed, the media," he said.
