ODI says NHS has public trust on data

Survey shows two-thirds of respondents trust healthcare organisations with their personal data, and nearly half approve of data sharing for research

Most people trust the NHS and healthcare organisations with their personal data, and almost half would be happy for their medical data to be shared to support research into medicines and treatments, according to a survey carried out for the Open Data Institute (ODI).

Just over 2,000 people were questioned online by pollster YouGov on their attitudes to the use of personal data in healthcare. The sensitivity of the issue was highlighted by the abandonment of the care.data programme in 2016 after protests that the public had not been sufficiently informed about how their information could be used; then by the controversy over the Royal Free NHS Foundation Trust sharing patient data with Google DeepMind.

The survey revealed that 64% of respondents trust the NHS and healthcare organisations with their personal data, much higher than local government at 41% and even above friends and family at 57%.

On sharing medical data about themselves for developing new medicines and treatments, 47% were agreeable, making it the most popular ‘data trade off’ in the survey. In addition, 37% said they would share data about their background and health preferences to help advance academic understanding of areas such as medicine or psychology.

General discomfort

More generally, only 9% said they already feel comfortable sharing data about themselves, while 33% said they would feel more so if an organisation provided an explanation of how it intended to use or share the data. 18% would welcome step by step instructions on how to share data safely; but 34% said nothing would make them feel more comfortable.

The results reinforce those of an earlier survey carried out by ComRes for the Information Commissioner's Office, which showed the NHS inspired the highest levels of trust in handling data. 61% of respondents rated GPs and other NHS bodies as four or five, indicating good levels of trust.

Jeni TennisonDr Jeni Tennison (pictured), chief executive officer of the ODI, said: “When data is working hard for consumers, it should help them make better decisions, save money, and present them with wider benefits and opportunities. This survey shows that more people need to understand how to share data confidently to reap these rewards.

“At the ODI we want consumers to feel more confident and informed about data. Data literacy is not a solution for all problems — we will always need strong regulation and well designed, ethical services — but it is part of the answer to building and retaining trust in data.

“Improving data literacy is partly down to organisations designing services that are far more proactive and transparent in explaining how they use customer data. This makes it easier for consumers to use their increased rights in the forthcoming EU data protection regulations, which put them more in control of personal data about them. 

“Additionally, organisations need to be clear about what customers will get in return for sharing data.”