Health authorities should implement a single Spine-based opt-out for identifiable patient data, covering all care settings, to uphold a promise to respect patients' rights, an NHS privacy watchdog says.
MedConfidential has released its proposal for a single opt-out following the Health and Social Care Information Centre's revelation that it is working to resolve a significant flaw with the wording of a current opt-out.
In a letter to the parliamentary health committee, the HSCIC said that patients who register a 'type two' objection – for those who object to information about them leaving the HSCIC in identifiable form for any reason, including direct care – "will not be approached for direct care services like e-prescribing, bowel screening, e-referrals or e-pathology reporting".
The letter said the HSCIC is contacting all patients who have registered a type two objection to ensure they fully understand the implications of their request.
The type two opt-out is separate to the type one opt-out being put in place for the care.data programme. The type one objection is for patients who object to their identifiable data leaving their GP practice for purposes other than direct care.
In a media statement about the problem, the HSCIC said it “fully acknowledge[s] the system-wide objection policy is not clear or simple for the public to use”.
Phil Booth, co-founder of privacy watchdog medConfidential, told EHI News the scale of the problem is unclear as the type two objection data has not been extracted from GP practices, but it is likely to be significant.
“Nobody's saying how many, but we know it isn't hundreds, and we suspect its hundreds of thousands based on the opt-out forms we've had downloaded and what individual GP practices have told us.”
Booth said NHS England and the HSCIC must uphold health secretary Jeremy Hunt's promise to honour patient opt-outs if they do not want their information to be shared.
“If the solution is to remove the opt-out, that's completely unacceptable…the secretary of state has promised this, it's not something that can just arbitrarily be removed.”
He said authorities also needed to avoid “some sort of dodgy backdoor fix, because that will set all sort of precedents”.
Booth said medConfidential's proposal, for a single Spine-based opt-out allowing patients to object to identifiable data being shared by any health and care providers for reasons other than direct care, would be easier for patients to understand while ensuring their rights are respected.
“Patients must be offered a comprehensible choice that covers the whole NHS – and ultimately the whole health and social care system – not just the bits that are easy to do.”
The HSCIC could start by targeting implementation in areas of major concern, such as Hospital Episode Statistics and its maternity and mental health datasets.
“They've been going at this for a couple of years now, and for there to be such a monumental screw-up at this stage, they need to take a breath and do what's absolutely necessary right now to ensure that patients who think they've opted out get what they wanted.”
EHI News asked both NHS England and the HSCIC a number of questions about their opt-out plans and the flaw with the wording of the type two objection, as well as what they are doing to resolve the problems.
An HSCIC spokeswoman told EHI News that the organisation could not yet respond as it was “a very complex area” which it was working to resolve with other organisations, but it would brief media as soon as it is able.
NHS England did not respond.