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New ICO guidance on transparent use of personal information

UK data regulator publishes free online guide to support those working in health and social care to ensure they abide by data protection law. 

Those working in health and social care often handle sensitive information about the most intimate aspects of a person’s health. Sharing such information in confidence to trusted professionals is a vital part of assessment and treatment – but there are laws about how that information can then be used.

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Photo by Markus Spiske

Indeed, people have a legal right to know what is happening to their personal information: this ‘transparency’ is a key principle of both the Data Protection Act 2018 (DPA 2018) and UK GDPR. Given the new technologies being developed that make use of large data sets to support care, planning and research, it’s vital that organisations in the sector understand their legal duties.  

Now the Information Commissioner’s Office (ICO) has published a free guide to support health and social care organisations with this issue, so that they can ensure they are meeting their obligations to be transparent about their use of personal data.  

The new guidance is intended for any organisation in the UK that delivers a health or social care service, or that uses health and social care information. That includes private and charitable organisations. The guidance explains the definition of transparency as understood in law and shows how to assess appropriate levels of transparency for the data held within an organisation. The guide also provides practical steps for developing effective transparency information. 

What’s more, the new guide includes feedback from health and social care organisations across the UK, gathered during a public consultation undertaken earlier this year. There is also a glossary of related terms and a cost-benefit analysis of providing this new guidance.  

Anne Russell, Head of Regulatory Policy Projects at the ICO, says: ‘Being transparent is essential to building public trust in health and social care services. If people clearly understand how and why their personal information is being used, they are likely to feel empowered to share their health information to both access care and support initiatives such as medical research.   

‘As new technologies are developed and deployed in the health sector, our personal information is becoming more important than ever to boost the efficiency and public benefit of these systems. With this bespoke guidance, we want to support health and social care organisations by improving their understanding of effective transparency, ensuring that they are clear, open and honest with everyone whose personal information is being used.’

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