NHS still holds citizen trust on data use

The national health system is the only public sector organisation most UK citizens trust when it comes to the use of personal data, a new survey from the Open Data Institute (ODI) and YouGov has found.

The study on how companies and the government are engaging with people around use of private information found 59% of people trust the NHS to use personal data ethically, the only type of organisation trusted by over half of those surveyed.

By contrast, central and local government bodies were trusted by 30% and 31% of the public, and only 7% trust public transport providers to do so. On the other hand, banks and building societies are trusted by 42% of those polled.

Nearly half of the respondents (44%) feel government and regulators should have the most responsibility for ensuring data about them is handled ethically.

Some 18% of those polled thought the companies and organisations collecting data themselves should have most of that responsibility, while 12% thought individuals should be most concerned, and 3% thought this was a matter consumer rights organisations should get involved with.

Citizens may trust the NHS to handle their data, but most oppose exploitation of patient information by tech companies. Separate research by health tech Sensing Health found the majority of UK citizens polled (76%) support use of anonymised NHS patient data to enhance diagnosis, research and care, while 95% of the MPs polled supporting such use of data to enable better treatment, and four-fifths said this would lighten the financial burden on the NHS.

However, any potential around NHS data is dampened by lack of trust from the public when it comes to allowing international tech businesses to use patients’ personal information, especially outside the UK.

According to the ODI, regulation and recent events around misuse of personal data have raised people’s awareness about their data rights, the potential for mishandling of personal data and the need for organisations to use data ethically.

“Organisations need to respond to their concerns and be more trustworthy in how they collect and use personal data,” said Jeni Tennison, CEO at the Open Data Institute. “This is not only the right thing to do, but it will help organisations to keep benefiting from the data they rely on and retain the trust of their customers and employees.”

“Talking about using data ethically is not enough, organisations need to publicly demonstrate how they do this to build trust,” she said.

The health service’s digital unit NHSX has stressed the need for ethical frameworks and guidance around patient data access when new data hubs were launched in September 2019, to focus on research into diseases such as cancer, Crohn’s disease and asthma.

“It is right that we manage access to any NHS information very carefully. It is time for the NHS to actively own and drive this agenda,” said NHSX chief digital officer Tara Donnelly, at the time of the launch.

“We need to control the design of research collaborations to make sure that benefits are returned to the NHS and the UK public,” she said.

“And we need to earn the public’s trust that we can do this well. That involves including patients and the public in decisions about how data will be used and accessed.”