Consumer watchdog Which? has called for more transparency and public outreach from NHS Digital over the scope and scale of the proposed General Practice Data for Planning and Research (GPDPR) program, which is currently on hold pending adjustments, after having been previously postponed following pressure from privacy campaigners and members of the public. Which? Polled nearly 1,700 adults in England and found that general awareness of the data sharing plan remained low, with 45% of people unaware of the programs and four in 10 of them saying they would probably choose to opt-out after learning about them.
Of those who were aware of GPDPR, the vast majority saying the NHS had failed to publicize it – those who had heard of GPDPR said they had got their information about it from the news or social media, and not from NHS Digital or their GPs, raising concerns about the accuracy of the information they received.
Which? Warned that NHS Digital’s failure to communicate the program’s value – the data will be used for advanced medical research and planning and will ultimately influence local NHS care planning and save lives – risked damaging trust in the NHS. At the start of the survey, 75% said they trusted the NHS to handle their GP records safely and transparently, but this dropped to 42% after learning about the scheme.