March 30, 2023
Last Updated on March 30, 2023
Michelle Corrigan, Programme Director of Better Security, Better Care explores why care providers need to do more to share with service users how their information is used.
We’re all more aware of how our information is used. We’ve seen how our online searches and purchases, or what we share about ourselves on social media can be used to target us with information (and misinformation).
But what about the often very personal details that we share about our health and care needs? Do we really consider how that information is managed? According to a project – It’s my information: Keep it safe – which the Better Security, Better Care programme commissioned from the Liverpool Social Care Partnership, most people don’t. But once they are made aware of the issue, they recognise it as really important, and it could impact on their choice of care services.
For example, one person involved in the project told us, ‘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% take into account.’
Launched 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 project has revealed that care providers can and should do more to explain how they use information.
Key findings
- Most people knew very little about the information that care services keep about them, how it is used or how it is looked after.
- Most people also said that their care service had not told them how their data is used or kept.
- There were some variations. The responses of younger people and carers suggested that they were more aware than older people. In addition, the responses of the people supported by the care provider, Journey Enterprises, suggested they were the most knowledgeable.
- This may reflect the fact that Journey Enterprises is understood to have been talking about these things with the people it supports for some time.
- Most people (almost 75%) said that, before taking part in this project, they had not thought or worried about what information their care service held about them.
- They also had not thought or worried about how that information was used, shared and looked after.
- However, after thinking about the project’s questions, people often said that this would be more important for them in the future.
There are simple steps that care providers can take, such as developing a plain English, easy to understand and access privacy notice, and sharing that proactively with people using or choosing services.
As a result of this study, we are going to review and simplify the template privacy notice on Digital Social Care which all care providers can use and adapt for their service. And we will produce an Easy Read version of it.
During our discussion with clients at Journey Enterprises, I was really struck by how obvious some problems – and solutions – are. For example, why is it that most organisations hide their privacy notice at the bottom of their website? Why is it not available in Easy Read or a simple audio description? Your privacy statement should be up front and easy to understand.
The study also showed that younger adults and family members were more knowledgeable about what information was kept about them – with older people being less knowledgeable or concerned. It’s a sign of things to come. As the more digitally-savvy generation ages, they are going to have more questions about what happens to their data. So care providers need to prepare now to ensure they have good systems in place – and be prepared to explain to people looking for care what these systems are.
The study also revealed that people would value some kind of quality mark that indicates if a care provider is meeting good data protection standards. The most comprehensive and well-recognised quality mark is having an up to date Data Security and Protection Toolkit in place.
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.
The DSPT certificate is a quick and visual way to demonstrate DSPT compliance. Again we would say don’t hide it away, make it up front and visible. Providers can:
- Print their certificate and display it on their premises.
- Upload it to their website. It could sit alongside their Privacy Notice, or alongside other quality markers and awards that they have received.
- Share it with people seeking care.
- Use it as evidence where relevant for the Care Quality Commission, commissioners, NHS partners, bids, data suppliers etc.
The study also suggests that organisations which signpost people to care services can do more. We want to encourage local authorities, charities and organisations that help people choose care to add data protection arrangements as a key issue to consider. How providers keep information safe is, after all, part of their legal and care responsibilities.
Care services – whatever their size or structure – need to keep a lot of personal information about the people they support. Ultimately, it’s not their information, it’s about the people they support. Having the right measures in place to keep that information safe is absolutely critical.
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
Michelle Corrigan is Programme Director of Better Security, Better Care.