HSCIC finds solution to removing details of people included on database despite objections
Patients will finally be able to opt out of the care.data database of medical records – six months after it was revealed that 700,000 requests had been ignored.
The NHS Health and Social Care Information Centre (HSCIC) believes it has found a solution to a controversy which left it “unable to implement or respect those objections”.
In June, it was revealed that around 700,000 requests – for data from hospitals and community healthcare services not to be passed to outside organisations – were effectively being ignored. It was feared that not sharing the data would seriously affect the treatment patients would receive in services such as cancer screening, or electronic prescriptions.
Now the HSCIC has told an inquiry by the Information Commissioner that all opt-outs “will be honoured by January 2016”.
The organisation will collect the NHS numbers of patients who have told their GP that they object to their data being disclosed, allowing it to process the requests.
In the meantime, data is still being released and the HSCIC will reveal whether the number of ignored requests has risen beyond 700,000 in the next few weeks.
In a letter sent by the Information Commissioner’s office, the HSCIC was told it had “not complied with the first principle of the Data Protection Act 1998”.
It “continued to share patient data with other organisations for purposes other than direct care after patients were offered an opt-out and significant numbers of patients objected to their data being used in that way”, the letter said.
However, the organisation will escape without a fine or a court appearance – if it agrees to an “undertaking” to correct the situation.
The Information Commissioner has shown leniency because it concluded ministers failed to give the HSCIC the legal authority to process the opt-outs in the first place. It would only have received that authority if legislation had been pushed through for the collection of data from GP surgeries; but care.data was shelved in March last year, amid protests that the public had been left in the dark about the database and had not received leaflets explaining the scheme.
In the letter, the Information Commissioner’s office notes: “The opt-outs remain on GP practice systems and details of which patients have opted out have never been sent to HSCIC. This means that the opt-outs have not been actioned and those patients’ personal data continues to be released by the HSCIC.”
But it reveals its sympathy in adding: “We note the difficulties that the HSCIC has experienced, namely that directions have not been issued to HSCIC to extract any of the data.”
The database contains confidential but anonymised records, detailing visits to hospitals and community services including mental health, and there are plans to add GP records.Surgeries in Leeds, Blackburn, Somerset and West Hampshire are carrying out GP trials, to be evaluated by the national data guardian, Dame Fiona Caldicott.
In the interim, the HSCIC decided “not to collect any identifiable GP data about that person for purposes beyond their own direct care”.