The Royal College of GPs and the British Medical Association have called on the government to delay the GP Data for Planning and Research (GPDPR) programme.
On 12 May, NHS Digital announced the new primary care data collection service was set to come into place on 1 July 2021, to make near-real-time information and data available with a purpose to support healthcare planning and medical research.
The intention is to enable access to pseudonymised patient data, for both planners and researchers, and according to NHS Digital, the programme has been designed to ‘the most rigorous privacy and security standards’. The organisation said in its announcement it had consulted with patient and privacy groups, including the British Medical Association, Royal College of GPs, and the National Data Guardian.
On Friday 4 June, the RCGP issued a call to Health Secretary Matt Hancock calling for an immediate delay to the programme. The College had previously written to NHS Digital in May, urging the communication to be better with the public about the new arrangements for data collection. The RCCP said: “An appropriate level of communication has not yet begun and time is now running out before the 23 June deadline for patients to register Type 1 opt-outs.”
“We have escalated our concerns to the Secretary of State and called for the delay in order to allow time for a proper public information campaign and for patients to make informed decisions about the use of their data, including the right to opt out.”
“The College supports the principle of improved and more secure sharing of data for legitimate healthcare planning and research purposes, but it is critical that appropriate safeguards are in place to guard against any inappropriate uses of this data. Most importantly, any sharing of data must be transparent and maintain public trust in how general practice and the NHS more widely uses their information.”
The BMA also called on NHS Digital and the government to delay the introduction of the 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 to opt-out of their coded health data, that is held in GP systems, being used, with daily ‘extracts’ of the coded data from practice systems to NHS Digital to begin from 1 July.
BMA GP committee executive team member and IT lead Dr Farah Jameel said in the BMA communication: “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.”
