NHS England’s flagship care.data pilots will not begin extracting data until GPs’ fears around opting patients out of the scheme and their conflicting legal responsibilities are addressed, following the publication of a major report commissioned by the Government.
The report, led by national data guardian Dame Fiona Caldicott and the Independent Information Governance Oversight Panel, lists 27 key questions and concerns in total that NHS England will have to address, including providing clear guidance for GPs on opting all their patients out of the scheme and maintaining their role as guardians of patient data.
Health secretary Jeremy Hunt has said that NHS England will have to ‘satisfy’ Dame Fiona that the recommendations have been adhered to before it can start extracting data from patient records.
However NHS England has said it hopes to respond to the questions soon.
The report was commissioned in May following the delay to the care.data scheme in February amid a national backlash after Pulse revealed that Oxford GP, Dr Gordon Gancz, had his contract threatened for opting his patients out of the scheme.
There was also major opposition from local GP leaders, who voted at the annual LMCs conference in May that the scheme should only proceed with patients explicitly consenting by opting in.
However, the report recommends that the scheme can proceed on an ‘opt out’ basis so long as other concerns are addressed.
- As Pulse has revealed, practices in the four pathfinder CCG areas will have to send an addressed letter about the scheme and information on how they can opt out, with a prepaid envelope from NHS England to return their response
- Practices themselves will have to consider how to get information to patients who are hard to reach
- NHS England must give explicit guidance on what GPs have to do satisfy its fair processing requirements under the Data Protection Act, and what support will be made available for this
- The pilot CCGs will have to demonstrate clear evidence from GP practices that their patient lists are up to date, and evidence that staff have been trained to explain the scheme and flow of data to patients
- Patients participating in the scheme must be able to see exactly what information has been extracted on them, and what secondary purposes it’s been used for, ‘in plain English’
Jeremy Hunt brought in new legislation after care.data was postponed in February, which makes it illegal to use extracted data for anything other than the promotion of health and care.
Tim Kelsey, NHS England national director for patients and information, said: “We welcome the report and will be considering the observations it makes very carefully. We’re committed to making sure we get this right for patients and will work closely with the National Data Guardian and the pathfinder sites to do so.”