The Department of Health and Social Care (DHSC) has been forced to delay its highly controversial mass collection of NHS patient data in England for two months.
The programme, which was due to begin on 1 July but will now start on 1 September, has been fiercely criticised by many inside and outside the health profession for its speed of introduction, lack of transparency and other privacy concerns.
Critics included doctor’s union the British Medical Association (BMA) which last week called for a delay until patients and the public had time to be aware of and understand the programme and choose to opt-out if they wish.
Announcing the change in the House of Commons, health and social care minister Jo Churchill MP said the GP data programme would strengthen the system and save lives.
“Patient data is of course owned by the patient and we are absolutely determined to take people with us on this journey,” she said.
“We have therefore decided we will proceed with the important programme but we will take some extra time as we have conversed with stakeholders over the past couple of days.
“The implementation date will now be on 1 September and we will use this time to talk to patients, doctors, health charities, and others to strengthen the plan, build a trusted research environment and ensure that data is accessed securely.”
‘Important win’ and non-existenent communications
In response to the delay, the BMA said the move was “an important win” for patients and the profession and slammed communications from NHS Digital on this programme inadequate or non-existent.
BMA GP committee executive team member and IT lead Dr Farah Jameel said: “Along with the Royal College of GPs, we made it abundantly clear to the government and NHS Digital that this programme needed to be delayed to allow for a proper in-depth public information campaign to give the public a chance to make an informed decision about whether they want their data collected as part of the new GP data extraction programme.
“We knew there was insufficient time until the first extraction – originally planned for 1 July – to allow for the public to have a proper understanding of what the programme was intended for and to give enough time to make fully informed choices on whether they should opt-out or not.
“We know from our members that many family doctors feel that all their patients may not yet know what’s changing, and many practices do not believe that they themselves have been given the right level of information nor adequate time to comprehensively understand the programme, its merits and the safeguards it will operate within.”
The union added that while data sharing played a key role in planning, research and developing treatments, allowing the public to make fully informed decisions was paramount.
“What’s important now is that the government takes full responsibility for ensuring that there is honest dialogue and robust public engagement,” Dr Jameel continued.
“GPs were never, and should not be, expected to take responsibility for communicating the details of this programme to patients, so we would expect to see the government use this extension to adequately communicate the programme details to doctors and the public.
“Patients across England must be afforded the ability to make an informed choice in this matter, with decisions based on the correct facts and information,” she added.