Today was supposed to mark the commencement of data-gathering for the controversial GPDPR scheme – but plans are now on hold. PublicTechnology recaps the story so far.
Today was supposed to mark the start of data collection via the General Practice Data for Planning and Research (GPDPR) programme.
This date was, in itself, two months delayed from the originally intended commencement, which was put back to allow NHS Digital to “speak with patients, doctors, health charities and others to strengthen the plan even further”, according to the organisation’s chief executive Simon Bolton.
That plan had already been the subject of much concern and criticism, including from union the British Medical Association and trade body the Royal College of General Practitioners, who jointly implored the healthtech agency to “reconsider your stance… and take immediate action to run a public information campaign”.
Even that action was not enough to ensure that GPDPR could go ahead as planned.
Instead, in a letter sent to GPs on 19 July, primary care minister Jo Churchill announced that there is no longer “a specific start date for the collection of data”. NHS Digital indicated to PublicTechnology that this is still the case.
“Since the programme has been paused, we have been developing an engagement and communications campaign, with the goal of ensuring that the healthcare system and patients are aware and understand what is planned, and can make informed choices.”
Primary care minister Jo Churchill
Churchill’s letter echoed the previous declaration that NHS wished to “strengthen the plan” to roll out the programme.
The plan, as it was conceived, is to make daily collections of patient data from GPs across England. This will include information on diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments related to patients’ physical, mental and sexual health, as well as data on sex, ethnicity and sexual orientation, and information on about staff who have treated patients.
This data will be pseudonymised and will not include will not include names or addresses – with the exception of postcode information, which is to be collected “in a unique coded form”.
The data to be brought together in a vast central repository represents more of “a broad general-purpose collection” than that which is currently collected via the existing General Practice Extraction Service. The intention is that the frequency and breadth of the data-gathering “will enable faster access to pseudonymised patient data for planners and researchers”.
The criticisms of the scheme have, largely, centred on what is characterised as a lack of communication – about the existence of GPDPR and what its introduction will mean for patients and, in particular, about what the originally planned as a hard cut-off date by which patients had to opt out.
The 1 September deadline for opting out has been scrapped. Patients can now opt out at any time and NHS Digital will also “create the technical means” for any data has already been uploaded to be deleted in cases where a patient registers a type 1 opt-out.
These opt-outs, essentially, prevent data from a patient’s GP record being shared beyond the bounds of their surgery for any reason other than their own care.
A type 2 opt-out allows patients to prevent their data being shared with non-NHS organisations.
Plans to “retire” the broader type 1 opt-outs have also been delayed by 12 months, Churchill said, and will “not be implemented without consultation with the RCGP, the BMA and the National Data Guardian”.
The opt-out system was one of four key areas in which work is to be conducted – and where certain conditions must be met – before data-collection will commence, Churchill said.
These conditions include ensuring the system can delete data that has already been uploaded, creating a “Trusted Research Environment” within NHS Digital, making more patients aware of the scheme through a communications campaign, and clearing the backlog of opt-outs to be processed.
Once the Trusted Research Environment is established, it will be NHS Digital’s sole means of controlled access to GP data and will ensure that information “never copied or shipped outside the NHS secure environment, except where individuals have consented to their data being accessed e.g. written consent for a research study”.
“This is intended to give both GPs and patients a very high degree of confidence that their data will be safe, and their privacy protected,” Churchill said.
The communications campaign, meanwhile, will run through four phases: listening; consultation; demonstration; and delivery.
“Since the programme has been paused, we have been developing an engagement and communications campaign, with the goal of ensuring that the healthcare system and patients are aware and understand what is planned, and can make informed choices,” the minister said. “The public rightly look to and trust general practice – through a centrally driven communication campaign, with clear messages, we will seek to ensure that the introduction of this collection does not impose an additional burden on practices.”
‘Making the process easier’
Communications have so far focused on working with GPs to disseminate information about the data-collection plans.
One of Churchill’s colleagues at the Department of Health and Social Care, innovation minister Lord Bethell, revealed that last month – in answer to a written parliamentary question from Liberal Democrat peer Lord Strasburger – that the engagement campaign could also potentially include writing to individual citizens to explain the programme.
“We are not ruling out writing to patients,” he said, “but there are concerns that this may not be the most effective way to communicate on this topic. Discussions are ongoing concerning writing to patients, but initially NHS Digital have been asked to work closely with the GP profession to ensure practices are supported in informing patients, whilst acknowledging the need to protect GP practices from additional burden.”
Bethell added: “Patients can register a national data opt out via post, phone or email, or register a type 1 opt out by contacting their GP and we are looking at ways to make this process easier for patients and GPs.”
Despite the delays and roadblocks, the government still seems intent on convincing patients that the programme will be to their benefit.
In the conclusion to her letter to doctors around the country, Churchill invoked the impactful headline of the recently published data strategy for health and social care.
“Data saves lives.”
She added: “The vaccine rollout for Covid-19 could not have been achieved without patient data. The discovery that the steroid Dexamethasone could save the lives of one third of the most vulnerable patients with Covid-19 – those on ventilators – could not have been made without patient data from GP practices in England. That insight has gone on to save a million lives around the globe.
“That is why this programme is so important.”