Nearly half of British adults are unaware of the General Practice Data for Planning and Research (GPDPR) programme, according to a Which? survey. 

The survey has revealed that as many as 20million Brits are still in the dark about GPDPR which involves sharing GP data to assist with research and planning. NHS Digital originally announced it was setting up a new primary care data collection service in May of this year, with the expectation it would go live from the start of July.

The service’s aim was to give planners and researchers access to pseudonymised patient information quickly. However, concerns over how informed people were of the plans, meant the implementation date was pushed back to September and then finally it was scrapped and instead data would only be collected once certain criteria have been met.

Now findings from Which? Have suggested that the delay was needed. The consumer champion has called for better communication and transparency from NHS Digital and the government to move plans forward.

Which?’s survey of nearly 1,700 adults in England found:

  • 55% had heard of the scheme, and of those who had, 71% felt the NHS had not publicised the scheme well.
  • For those unaware of the scheme, 39% stated they would now be likely to opt out of the scheme.
  • 50% of respondents who were aware of the NHS plans said they heard about it through news or social media challenges.
  • 42% said that hearing about the scheme made them trust the NHS less.
  • 32% of those who knew of the scheme and had opted out of it, found the opt-out process overly complicated.

One of the issues that was raised was the lack of understanding about how the data would be used. A number of those who chose to opt out said they did so to prevent their data being sold to private companies. Yet NHS Digital has said the collected data would not be shared with marketing or insurance companies and would not leave the NHS.

Another issue that became apparent was how under-publicised the scheme has been. Which?’s survey found that 45% of respondents were unaware of GPDPR. With many also saying they weren’t informed about the move via NHS channels, it raises concern over how accurate the information patients are seeing is.

Rocio Concha, Which? director of policy and advocacy, said: “The coronavirus crisis has thrown into sharp relief the opportunity for health data to be used in ways that benefit patients and society in general  – however it’s really important to engage the public effectively on how their data is going to be used and the governance of data sharing with third parties.

“NHS Digital and the government are right to delay implementation of the GPDPR scheme and must now go to greater lengths to engage the public, raise awareness of the scheme, and increase people’s understanding of it through better communication and transparency.”