NHS data grab delayed again, after millions opt out
NHS Digital says it will undertake a 'listening exercise' before announcing a new start date
Nearly 1.4 million people opted out of the UK government's scheme to extract patient data from GP IT systems in just two months: a move that has forced the government to put the scheme on hold.
According to The Observer, 107,429 people opted out of the NHS General Practice Data for Planning and Research (GPDPR) scheme in May. Nearly 1.3 million more followed in June.
The programme is currently on hold, with no new date for implementation.
NHS Digital says it will undertake a 'listening exercise' before announcing a new start date.
NHS Digital announced the GPDPR initiative in May. The government said at the time the scheme would enable GPs to transfer data from patient records in England in 'near real time'.
The GPDPR sets out plans to accumulate a range of information into a single database, including details of gender, ethnicity, sexual orientation, along with other data from patient records held on GPs' systems.
Approved researchers and private commercial organisations will be able to access the information, though it will exclude any personally identifiable details such as names, addresses, images or details of conversations.
After the GPDPR programme was announced, critics said it was being implemented too quickly and without enough consultation: the original opt-out deadline for patients was just six weeks from the announcement.
While GPs objected to the short deadline, privacy campaigners warned that the government could reverse the process to remove personal personally identifiable details from the data.
Taking note of the objections, Parliamentary Under Secretary of State Jo Churchill announced in June that the government was delaying GPDPR until 1st September, to give GPs more time to communicate the changes to patients.
Last month Churchill announced that the government had set out "a new process for commencing data collection, moving away from a previously fixed date of 1 September."
NHS Digital has also said that the scheme now allows patients to opt out at any stage, with their data deleted even if it has already been uploaded.
Phil Booth, coordinator of privacy group medConfidential, told The Guardian that people care about their GP records, medical confidentiality, and telling GPs that they don't want their data to be used by private companies.
"We became aware of this latest GP [data] grab in late March," Booth said.
"We said 'well that's just going to blow up' … and then it did blow up, exactly as we predicted."
An NHS Digital spokesperson told the newspaper that the agency takes its responsibility to safeguard data "very seriously," and it would ensure that only "organisations that have a legal basis and legitimate need to use it for the benefit of health and care planning and research" will be able to use the information.
"We have listened to feedback on proposals and will continue working with patients, clinicians, researchers and charities to inform further safeguards, reduce the bureaucratic burden on GPs and step-up communications for GPs and the public ahead of implementing the programme."
In June, Alex Norris, shadow minister for primary care, wrote a letter to Sarah Wilkinson, the chief of NHS Digital, stating that he supports the principle of sharing patients' data with other agencies to improve health care, but the rollout "must be built on trust".
Norris noted that there were serious questions that NHS Digital needed to answer, including which organisations would access the data and for what purposes, what safeguards were put in place to protect patient data, and how patients who chose to opt out of the programme could be allowed to block sharing of future data and removing data from the collection.