Most people unaware of how their information is used: care sector can do more

Most people unaware of how their information is used: care sector can do more

People who use care and support services and their families are often unaware of how their information is kept and managed. But when they do think about it, they realise how important it is, and it could impact on their choice of services.

Launched today at learning disability service, Journey Enterprises Ltd, in Newcastle, It’s my information: Keep it safe records what people using care and support services know and think about how their information is stored and shared.

The study, which was commissioned by the national Better Security, Better Care Programme and delivered by Liverpool Social Care Partnership (LSCP), reveals that most people have not been told what data is held about them or how it is managed. In fact, most people don’t think about it – but when prompted they do consider it to be important.

Michelle Corrigan, Programme Director of Better Security, Better Care says:

“This really matters. Care and support organisations need information about people’s needs and preferences in order to deliver good support. But they also need to manage that information well – including ensuring that people understand what information they keep and how it is used. We are calling on all care and support providers to check and improve what they are doing.”

Over 150 people took part in the study – including older people, people with learning disabilities, and family members.

Older people (over 65) generally said they did not know what information their care services keep about them, or how it is used and looked after. Younger adults and carers were ,more knowledgeable. The people who said they knew most were those supported by Journey Enterprises – a service for people with learning disabilities in the North East.

Most people said that they had not previously thought about or worried about the information their care service keeps about them. However, after thinking about the questions asked by the project, most people said that it was something that would influence their choice of care service in future.

One participant said:

“I never thought about information safety influencing my choice of care providers before now, but it is concerning because of cyber crimes, cloning of IDs, wars and so on. It is something that I would now 100 per cent take into account.”

The report also revealed that people would value a quality mark that indicates if a care provider is meeting good data protection standards.

Michelle Corrigan explains:

“The Data Security and Protection Toolkit (DSPT) is the official, comprehensive way for care providers to assess and demonstrate how they are protecting people’s information.  Since this study was carried out, we’ve introduced a DSPT Certificate so that providers who complete the toolkit can easily show the standard they have met. And of course we continue to offer free, expert support to help all providers, whatever their size or service, to complete the DSPT.

“We are also encouraging local authorities, charities and organisations that help people choose support services to add data protection arrangements as a key issue to consider.”

Another simple step that care providers can take is to review and actively share their Privacy Statement with people who draw on their services and their families.

Maggie Leadbeater, Operations Manager and Safeguarding Lead at Journey Enterprises says:

“As a learning disability service, we want to ensure that people are fully aware of how we use their information. That’s why we were delighted to take part in this study – and to launch the final report here in Newcastle. Our experience is that it is perfectly feasible to explain privacy issues simply. And all care providers should seek to do so.”  

As a result of this study, Digital Social Care is updating their template Privacy Policy to make it easier to understand, working with Journey Enterprises to develop a template for an Easy Read Privacy Statement, and encouraging care providers and organisations that help people select care to ask questions about how data is used.

It’s my information: Keep it safe is available in standard English and Easy Read on the Digital Social Care website.

Follow the discussion on twitter #ItsMyInfoKeepItSafe

Media contact

Iris Steen – Tel 07792 636761, email [email protected]

Notes to Editors

Better Security, Better Care

Better Security, Better Care is a national and local support programme to help adult social care providers to store and share information safely. It covers paper and digital records.

The main focus of the Better Security, Better Care programme is to help care providers to understand the importance of data and cyber security, and complete an annual, online self-assessment using the Data Security and Protection Toolkit (DSPT).

Liverpool Social Care Partnership

Liverpool Social Care Partnership is consortium of social care organisations in Liverpool. They provide training, information and support services to care providers, and they are one of 28 Better Security, Better Care local support partners across England helping care providers to use the Data Security and Protection Toolkit.

Journey Enterprises Ltd

Journey Enterprises Ltd is a charity supporting people with learning disabilities in the North East. They provide life skills, employment and training opportunities.


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