The British Medical Association (BMA) has criticised NHS Digital for its lack of clear communication over the opt out deadline for its postponed mass extraction of 55 million people's GP data in England.
The call for clarity follows the government's decision to delay the implementation of NHS Digital's data haul - the General Practice Data for Planning and Research (GPDPR).
NHS Digital said it would push back the data collection process from 1 July to 1 September, but has not told the public the deadline by which they can opt out of what has been called the "biggest data grab in NHS history," leaving GPs responsible for informing patients how long they might take to process opt-out requests.
Dr Farah Jameel, BMA GP committee executive team IT lead, told The Register that practice staff did not have the capacity to process a surge of opt-outs, especially if they came at the very last minute.
"The public needs a clear deadline by which they can opt out, alongside clear instructions on how to do this if they so wish. We have been urging the government and NHS Digital to consider making the process of opting out simpler, and in effect remove any additional burden [that] large volumes of Type 1 opt-outs could place on already under-pressure general practice. We urge NHS Digital to clarify this with both the public and practices.
"NHS Digital must also make clear to patients what will happen to their data if they do not opt out before the deadline, and how long this data will be stored for, as well an explanation as to why it cannot be retrospectively deleted should patients subsequently decide to opt out."
Last week, Jo Churchill, under-secretary for health and social care, said the extraction of data from GP systems under GPDPR would be pushed back by several months.
But this left the question of how long patients would have to tell GPs of their decision to withhold their historical medical data from the central data store, which could hold it indefinitely and share it with academic researchers and private-sector firms.
Under the earlier deadline, NHS Digital had told the public they would have until 23 June, a week before the extraction was due to take place. Under the new deadline, the central government health IT organisation is not providing that guidance, leaving it to GPs to decide when the deadline is.
Specialist GP news outlet Pulse reported that NHS Digital had advised the new cut-off date for sending opt-out requests to GP practices would be 25 August.
However, NHS Digital has denied it offered such advice.
A spokeswoman said: "Patients are able to register an opt-out at any time and the data will cease to flow. This does not apply retrospectively to data that has already been collected prior to the individual opting out. With regards to GPDPR specifically the data will start to flow from 1 September and patients would need to opt-out ahead of this date if they do not want their data to be shared."
It might put doctors in a difficult position. Retired GP and long-time expert on health informatics Mary Hawking tweeted: "Daresay if you put your Type 1 optout through the surgery door at 11.50pm on 31st August, it will *still* be the GP's fault that your pre-existing data gets uploaded! What world does @NHSDigital live in?"
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Meanwhile, NHS Digital has brought on board some heavyweights to help to steer it through the changes, which are proving controversial due to the perceived lack of transparency from... NHS Digital.
In a blog published last week, Simon Bolton, interim CEO of NHS Digital, said Sir Ian Diamond, the National Statistician, would advise on how NHS Digital could "ensure we follow best practice in preserving privacy, drawing on the excellent work by ONS to make data available for research in a privacy-preserving way."
Helen Stokes-Lampard, chair of the Academy of Medical Royal Colleges and former chair of the Royal College of GPs, would also "advise him on how we can ensure this programme rolls out successfully," Bolton said. ®
Opting out of NHS Digital data grab
Despite the delay, 55 million citizens of England will need to opt out of the involuntary General Practice Data for Planning and Research scheme before it is introduced to prevent the entire history of their GP visits being slurped, according to campaigners.
The official announcement is here. Opt-out forms are here [.docx]. We understand you will need to give this form to your GP practice to prevent data held by your GP from joining the central repository, which will now happen on 1 September.
There is also a secondary opt-out process that stops non-GP data, such as hospital or clinic treatments, being used or sold for purposes other than your direct care. Healthcare data privacy campaigner medConfidential explains both Type 1 and Type 2 opt-outs here.