Following concerns raised about the mass data collection excercise, NHS Digital has set out plans to build trust and make data opt-out easier for patients.
In a letter to all GP’s on19 July Minister for Primary Care and Health Promotion, Jo Churchill set out a new process for commencing data collection, moving away from a previously fixed date of 1 September. Collection will now only begin when the following criteria have been met:
- 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, and outstanding opt outs being processed.
- 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 to further benefit patients.
- A campaign of engagement and communication has increased public awareness of the programme, explaining how data is used and patient choices.
There is no indication yet of how it will be established that these criteria have been met, or how and when patients will be informed they have been met.
Healthwatch England poll finds trust in NHS has fallen
Healthwatch England conducted a polling excercise in June 2021 and discovered that 83% of people rated the NHS as either ‘very’ or ‘moderately trustworthy’ when asked if they thought health service would keep their data safe. However, this had fallen from 92% from similar research they did in 2018.
There was very high awareness of the NHS's GP data collection programme and there had been a significant drop in people's willingness to share their data.
Over half of respondents (54%) said they were not confident that companies that misuse data would be fined appropriately. Yet 46% said they would be less likely to opt-out (i.e. more likely to share their data) if this was addressed.