NHS Digital postpones plans to gather GP patient data after criticisms over transparency
Commencement of GPDPR pushed back by two months
Plans for NHS Digital to collect and centralise swathes of patient data from GP practices have been pushed back by two months.
The delay – from 1 July to 1 September – comes shortly after unions and sector bodies representing doctors publicly expressed concerns about the transparency of the plans.
The General Practice Data for Planning and Research (GPDPR) programme was unveiled last month. The scheme will see NHS Digital 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 NHS Digital claims it will collect “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”.
Since the project was unveiled, it has faced criticism over what some characterise over a lack of transparency and communication with patients about the plans. Critics have included MPs from both sides of the House of Commons, tech industry groups, and civil society organisations.
In an open letter to NHS Digital in late May, leaders of both union the British Medical Association and trade body the Royal College of General Practitioners also urged the healthtech agency to “reconsider your stance on this and take immediate action to run a public information campaign”.
“It is important than any sharing of data is transparent and maintains public trust in how general practice and the NHS more widely uses their information,” the letter said. “While we acknowledge that NHS Digital’s position is that this is not a significant increase in data sharing, it does represent a shift in terms of the scale and centralisation of the data held and is widely perceived to be a meaningful change. The current situation, whereby communications have been limited to NHS Digital's online platforms, and by extension only those who are digitally literate is not sufficiently informing patients of the collection.”
It added: “Providing information for GP practices to share in waiting rooms after the programme had already launched, is an ineffective addition, especially given continued social distancing restrictions which limits the numbers of patients attending their GP practice in person or spending time in waiting rooms. Moreover, it is unreasonable and inappropriate for it to be left to GP practices to communicate with patients at a time of extreme workload pressures and focus on the Covid-19 vaccination programme.”
NHS Digital has now announced that the commencement of gathering data via the GPDPR programme will now be postponed from 1 July to 1 September.
"We are absolutely determined to take people with us on this mission,” said chief executive Simon Bolton. “We take our responsibility to safeguard the data we hold incredibly seriously. We intend to use the next two months to speak with patients, doctors, health charities and others to strengthen the plan even further."
The statement from NHS Digital added that both the BMA and RCGP have been “consulted throughout” the development of the new system, and that all parties are united in “their desire to ensure the public and patients are able to make an informed decision about how their data is used”.
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