Launch date for care.data trial uncertain
Concerns raised over timeline for trials of flagship NHS England patient data sharing scheme as all party group notes lack of clarity on project
NHS England is yet to announce a date for when it expects to release a shortlist of GP practices that will pilot its flagship care.data project, which was originally scheduled to launch earlier this year.
The organisation noted that it had not currently set a timeline for when pathfinder trials would begin at select GP practices, adding that it was working to "get assurances complete" before announcing a launch date for tests to start. While some GP surgeries operating in proposed test areas have been formally invited to trial the programme as pathfinders, NHS England added that it could not at present confirm the full list of practices signed up to take part until the process was completed - currently expected in the New Year.
"The pathfinders will be supported in testing different types of communication with patients in those areas, explaining the benefits and risks of data sharing, and making clear their right to opt out from having their confidential information shared for purposes beyond their direct care," said an NHS England spokesperson. "No data is currently being extracted. "
In October, NHS England announced it would be unveiling a select number of surgeries in the Clinical Commissioning Group (CCG) areas of Leeds, Somerset, West Hampshire and Blackburn with Darwen that would test the patient data sharing scheme in "due course".
However, recent findings published by parliament's All Party Group for Patient and Public Involvement in Health and Social Care have found that question marks remain over the project's aims and implementation. Notable concerns raised in the findings included details on the types of people and organisations able to access data, and debate over whether patients should choose to opt in, or opt out of having data shared.
"There has been a lack of clarity and publicity around the care.data programme, how the data will be used, who the data will be used by, and what implications it has for end of life care," said the findings. "It was felt that the benefits [of the scheme] would only be met if strict confidentiality protocols are maintained and that such a programme is sufficiently explained, so that patients understand their choices, their rights, and the potential benefits of taking part."
A future meeting has now been scheduled to be held in 2015, with the care.data team expected to be asked to report on progress of the plan if updates are not forthcoming.
Care.data has proved controversial with pressure groups, which have raised concerns over the confidentiality implications of sharing highly personal data concerning medical and mental health histories. Responding earlier this year to concerns from groups like the British Medical Association (BMA) over plans for implementing care.data, NHS England's director of patients and information Tim Kelsey said the organisation had heard privacy fears "loud and clear".
"We need to provide more support to GPs to communicate the benefits and the risks of data sharing with their patients, including their right to opt out," he said.
According to NHS England, care.data is intended to bring together what it calls coded medical details held by GPs with hospital data stored with the Health and Social Care Information Centre (HSCIC). It is hoped that combining these data sets would allow commissioners to better understand how to treat diseases and deal with emerging patterns and trends in healthcare.
Citing clauses within the Care Act 2014, NHS England said that data would be limited solely to provide health and social care issues, and prevented from "purely commercial purposes".
"At no time will anyone's name or full address or notes of conversations with their GPs be collected," said NHS England.
While acknowledging potential healthcare benefits of data sharing in the NHS, patient pressure groups have joined BMA members in opposing any plans to proceed with care.data with the explicit permission of patients to 'opt-in' to the system. The Patient Concern group said a failure to secure this permission would ultimately undermine patient trust in their GPs.