THE BRITISH MEDICAL ASSOCIATION (BMA) is calling on NHS Digital in England and the UK Government to delay the introduction of its new data programme until patients and the public have had time to be aware of and understand the programme and choose to opt-out if they wish.
On the current timescale, patients in England have until 23 June 2021 to opt-out of their coded health data, held on GP systems, being given to NHS Digital on 1 July, when it will then be made available for planning and research purposes.
Daily ‘extracts’ of the coded data from practice systems to NHS Digital will then begin from 1 July. Patients can continue to register Type-1 opt outs at any given point in time, however once the first extraction has commenced, this will not erase any data held by NHS Digital that has already been shared.
The BMA feels this timeline is far too short because NHS Digital has not transparently and actively engaged the public in increasing awareness of the GPDPR (General Practice Data for Planning and Research) programme since its announcement in early May. On 27 May, the BMA and the RCGP wrote to NHS Digital urging for improved communication with the public.
BMA GP committee executive team member and IT lead, Dr Farah Jameel, said: “Everyone deserves to know what happens to their healthcare data, and throughout our discussions with NHS Digital about this programme, we have stressed the importance of clear communication with the public.
“People need to fully understand what this programme means and crucially, how to opt-out of their data being shared, if this is what they want to do.
“However, recent weeks have shown that communication from NHS Digital to the public has been completely inadequate, causing confusion for patients and GPs alike. Family doctors have a duty to their patients, and have their best interest at heart – so are understandably hesitant to comply with something that patients may know nothing about and that they themselves do not fully understand, even if this is a legal requirement.
“With less than four weeks until the programme gets fully underway it’s clear that the timeline needs a hard reset. NHS Digital and the Government must postpone the date of the first ‘extraction’ of data – scheduled for 1 July – until such time as the public are in full possession of the facts and are able to make a fully informed decision about what happens to their data.
“Unclear messaging and a complete failure to develop a wide ranging and far-reaching public engagement plan to communicate with the population, has resulted in a completely unrealistic expectation that GPs are left to communicate these complex changes.
“Rushing through such fundamental changes to confidential healthcare data, losing the confidence of the public and the profession, will severely undermine the programme and threaten any potential benefits it can bring to healthcare planning and research.
“Drawing insights from health-related data is vital for health service planning, and is a crucial way to monitor public health, organise local services and look at population-level health needs. Whilst the BMA has been engaged during the development of this programme, our emphasis has always been on advocating on behalf of the profession and patients. We will continue to hold NHS Digital to account, to ensure that there are appropriate safeguards in place as to how the data collected is used, and that the views of the profession are represented in all discussions pertaining to patient data.”
BMA patient liaison group chair Christine Douglass said: “If the Government goes ahead with this programme in less than a month and without any proper public engagement, it will result in a loss of support from the public for data being shared to improve care and further health-related research.
“Many members of the public will be totally unaware this programme is happening and will not have had chance to voice concerns about transparency, confidentiality, commercial interests, the security of the data and its intended use. A scheme of this magnitude needs weeks of public engagement, which should not be left to GPs to undertake, so the Government needs to pause the programme and start engaging with patients.
“Crucially, public consultation and engagement over the entire process should have been more robust. Policies like this, involving patients and their data, should be co-produced with patients as equal stakeholders from the beginning rather than simply informing them that they are being introduced.”
* Read the letter to NHS Digital here.
* Source: British Medical Association