Healthcare organisations are “most trusted” to handle data

DataIQ News

Consumers are far more willing to share their personal information with NHS and healthcare organisations than anyone else, even friends and family, according to an Open Data Institute (ODI) study which shows a desire to help develop new medicines and treatments - the so-called "data for good" - is the most popular data trade off.

The survey shows that 64% of consumers trust healthcare organisations, while friends and family (57%) and banks (57%) come joint second, followed by local government (41%) and online retailers (22%).

Just one in ten trusts social media organisations such as Facebook and Twitter with personal data, a finding echoed in another ODI  report published recently with Dunnhumby.

In addition, nearly half of respondents (47%) said they would share medical data about themselves, if it went on to help others.

Meanwhile 37% of people (and 49% of 18 to 24-year-olds) said they would share data about their background and health preferences if it helped advance academic understanding of areas such as medicine or psychology.

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 - including Care.data and Google DeepMind - causing controversy.

A generational divide runs across sectors, however; while 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 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 but 33% said they would feel more comfortable if an organisation provided an explanation of how it intended to use or share the data.

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.

ODI chief executive Dr Jeni Tennison 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 GDPR, 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."