Exclusive: An LMC is considering a county-wide boycott of the care.data extracts programme to raise awareness around their concerns, in a move NHS England said would be against the law.
Northumberland LMC leaders said practices in the region are looking at ways to boycott the controversial programme, which is being introduced by NHS England and will see confidential information from GP records sent to the Health and Social Care Information Centre (HSCIC) and shared with commissioners, private companies and researchers in either identifiable and de-identifiable forms.
Practices in the region are concerned that allowing the extracts to happen would leave GPs vulnerable to legal action from patients under the Data Protection Act.
However, NHS England said that failure to disclose the data will mean practices would be in breach of their statutory obligation under the Health and Social Care Act (HaSCA) to share confidential information with the HSCIC.
Health secretary Jeremy Hunt announced patients would have the right to opt out of having data shared with the HSCIC, or shared beyond the HSCIC, but it will be GPs’ responsibility to make patients aware this was happening.
NHS England has now written to practices in the north of England, and has given them eight weeks to make patients aware of the changes using materials such as posters and leaflets jointly created by NHS England, the BMA and the RCGP. The other areas of the country will follow shortly.
But Northumberland LMC chair Dr Jane Lothian said the LMC was considering a boycott, and was looking into whether it would be legal or practical.
Dr Lothian said: ‘We’re looking at whether a county wide intention to opt out would be feasible and appropriate, to give patients more time to make an informed decision. This is one option amongst others. We just thought how on earth are we going to make our concerns about this heard?’
She added that GPs are caught between legal obligations, and that the LMC is aware of NHS England’s stance that a boycott would leave GPs in breach of their duties under the HaSCA.
Dr Lothian said: ‘We’ve got a statutory duty from the HaSCA to do A and a legal duty from the DPA to do B. We’re just going to have to live with that and there’s no definitive guidance. I am aware of the stance of the NHS England; its not helpful.’
One practice in the area was only notified by NHS England about the extracts two weeks into the eight week awareness raising period allowed by NHS England, including receiving resources such as posters and leaflets, she said.
She added that the whole LMC committee was concerned about the extracts, as practices have not been given enough time to make patients aware of the changes to the handling of their personal data, and their right to opt out. There were also concerns that the information extracted would make patients in the area identifiable, she said.
She said: ‘We’re concerned about the short timescale, over the summer holidays. We haven’t been given the resources or time for this. A couple of hundred leaflets in a practice of 10,000 is neither here nor there. If you’re lucky enough not to go to my GP practice in two months, then there’s nothing to tell you about this.’
NHS England has said that GP practices will be in breach of the Health and Social Care Act if they do not disclose data and that patients have the right to opt out of the extracts.
A spokesperson for NHS England said: ‘The Health and Social Care Act creates a statutory obligation on GP practices to disclose personal confidential information to the HSCIC in certain circumstances, for example to comply with a direction from NHS England. GPs will be in breach of this statutory requirement if they do not disclose the data, unless a patient has registered an individual objection.
‘The care.data programme will provide a vital information to commissioners and approved organisations about the quality, efficiency, and equity of health services.
‘We are deeply committed to protecting patients’ privacy and will honour the wishes of any individuals who object to their personal, confidential information being sent to the HSCIC. Working jointly with the BMA, the RCGP, and groups of patients we have developed a range of resources to support GP practices with their duties under the Data Protection Act.’
They reiterated a pledge made in the Government’s response to the Caldicott report, that areas with high levels of patients opting out of the extracts would be monitored to find out the reason for this.
They said: ‘Where there is an unusual number of objections recorded in a particular GP practice, NHS England will work with the Health and Social Care Information Centre, the RCGP and the BMA to explore the reasons in more detail.’
A spokesperson for the BMA said: ‘Data extraction is needed so commissioning groups can effectively plan local services. It’s crucial, however, that patients have confidence in how their personal information is stored and used.
‘That’s why the BMA pushed hard for improvements to be made to the government’s original proposals on data extraction, including successfully for the right of patients to opt out of their records being used for care.data or passed to certain secondary sources.
‘Crucially, following the efforts of the BMA, commissioners will only have access to anonymised data and if patients decide after eight weeks not to give permission for their data to be shared they can inform their GP. The data is not for commercial sale and, with the exception of possible admin fees there is no charge for accessing the data.
‘We recognise the concerns some GPs have expressed and the BMA is continuing to lobby NHS England and the Information Commission’s Office to ensure they advise GP practices on compliance, and to support patient awareness campaigns. NHS England have stated they intend to launch further awareness raising activities so GPs don’t have sole responsibility for making informing patients.
‘There is a legal requirement for GP practices to provide this information.’