The not-for-profit consumer champion Which?, has published findings following a survey with 1,681 participants to understand the nation’s views on the GP Data for Planning and Research programme.
Which? found that 55 per cent of participants had heard of the scheme, with 71 per cent feeling it had not publicised it well. The results highlight that there is ‘low awareness’ and a lack of ‘sufficient information to make a choice’. Of the 45 per cent who were unaware of the plans, 39 per cent then said they would now likely want to opt out after being told about the programme in the survey.
Extrapolating the numbers, the consumer group estimates approximately 20 million people are unaware of the programme, representing nearly 45 per cent of adults in England.
The role of the media played through, with half of respondents citing they heard about the plans through news channels or social media.
At the start of the survey, 75 per cent of respondents said they had trust in the NHS to handle their GP medical records safely and transparently. However, 42 per cent said hearing about the scheme in the survey had made them trust the NHS less – the wording used to describe the programme was not disclosed.
The consumer champion also highlights the need for improved communication and transparency moving forward, including to communicate the benefits of effective sharing of health record data.
The research also notes: “Of the group who had heard of the scheme and had opted out, a third (32 per cent) of them said that they had found the opt-out process difficult.”
NHS Digital has recently announced new plans for the GP Data for Planning and Research programme, which sets out that patient data will now no longer be collected unless three tests, as set out by Jo Churchill, Minister for Primary Care and Health Promotion, have been met.
Challenged about a planned launch on 1 July 2021, the programme was later pushed back and set to begin data collection from GPs on 1 September, to allow patients more time to opt out following a strong reaction from the public and health professionals.
After listening to feedback, NHS Digital says it is “determined to continue working with the sector on key elements to inform further safeguards, reduce the bureaucratic burden on GPs and step-up communications for GPs and the public” before confirming a new, official implementation date.
In a letter to GPs, the Minister for Primary Care and Health Promotion set out the changes that are intended to increase security and privacy and enable more choice for patients. The three tests to pass before patient data collection can commence are as follows:
- The ability for patients to opt out or back in to sharing their GP data with NHS Digital, with data being deleted even if it has been uploaded.
- A Trusted Research Environment is available where approved researchers can work securely on de-identified patient data which does not leave the environment, offering further protections and privacy while enabling collaboration amongst trusted researchers.
- When a campaign of engagement and communication has increased public awareness of the programme, explaining how data is used and patient choices.
Which? noted support for the further delay and believes providing full transparency and better communication about the scheme will enable people to understand exactly how their data will be used.
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.”
The survey was conducted between 6 and 9 July 2021.
