The Open Data Institute (ODI) has released findings from new consumer research revealing current attitudes of British adults online towards sharing personal data.
The survey shows high levels of trust in and knowledge of an organisation mean that consumers feel more comfortable sharing data with them. Consumers are prepared to share data about themselves if it benefits them or others in society. The survey was conducted online by YouGov and the data has been published here.
The survey found that young adults were generally more comfortable sharing information about themselves, compared to their parents’ generation. One in five 18 to 24-year-olds said they would feel comfortable sharing their date of birth to an organisation they didn’t know. For 45 to 54-year-olds, the figure was just 8%.
Trust in government
The survey indicates that most consumers (64%) trust the NHS and healthcare organisations with personal data about them, ranking top ahead of friends and family (57%), banks (57%), local government (41%) and online retailers (22%). Just one in ten trust social media organisations such as Facebook and Twitter with personal data, a finding echoed in the report published recently by dunnhumby and the ODI looking at opportunities in the retail grocery sector thanks to the forthcoming General Data Protection Regulation.
Additionally, nearly half of respondents (47%) said they would share medical data about themselves, if it helped develop new medicines and treatments, the most popular ‘data trade off’ in the survey. Meanwhile, 28% were comfortable with personal data such as their online activity being used to monitor crime and keep them from harm and 38% of 18 to 24-year-olds said they would be happy to share data about their spending habits to help save them money via things such as new savings accounts, insurance policies, shopping discounts, this fell to just 15% of over 55s.
The survey shows trust in the NHS to look after personal data, and the recognition of wider medical and health benefits from sharing data, remains high despite high profile NHS data sharing programmes causing controversy. Care.data, a programme launched in 2013, linking information from hospitals and GPs to help monitor performance and research new treatments, was criticised for sharing medical records with private companies.
The sharing of patient data by the Royal Free NHS Foundation Trust with Google DeepMind to identify patients at risk of acute kidney injury was censured by the Information Commissioner for failing to inform patients about the way data about them was being used. In both cases there has been poor engagement with the public about whether and how data would be used and shared, uncertainty over whether commercial deals would generate equitable outcomes, and a lack of patient knowledge around the benefits of data sharing, and how data can be shared data safely.
The survey shows most consumers need help to feel comfortable sharing their data, and there is a clear need for improved data literacy:
- Just 9% said they already feel comfortable about sharing data about themselves.
- 33% said they would feel more comfortable if an organisation provided an explanation of how it intended to use or share the data.
- 18% would welcome step by step instructions from an organisation about how to share data safely.
- Despite the benefits of sharing data, many still feel uncomfortable about sharing any data at all – 34% of respondents said that nothing would make them feel more comfortable sharing data about themselves.
Dr Jeni Tennison, CEO at the Open Data Institute 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 GDPR 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.
“It is also important that educators include data literacy in courses both in formal education environments, and informal environments for people not in full-time education.”