ICO publishes guidance to improve transparency in health and social care

The Information Commissioner’s Office (ICO) is supporting health and social care organisations to ensure they are being transparent with people about how their personal information is being used.

The UK data protection regulator has today published new guidance to provide regulatory certainty on how these organisations should keep people properly informed.

The health and social care sectors routinely handle sensitive information about the most intimate aspects of someone’s health, which is provided in confidence to trusted practitioners. Under data protection law, people have a right to know what is happening to their personal information, which is particularly important when accessing vital services.

“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.”

– Anne Russell, Head of Regulatory Policy Projects

The guidance will help organisations to understand the definition of transparency and assess appropriate levels of transparency, as well as providing practical steps to developing effective transparency information.

Following a public consultation earlier this year the guidance incorporates feedback from health and social care organisations across the UK. Aimed at any organisation that delivers a heath or social care service or uses health and social care information, it supplements existing ICO guidance on the principle of transparency and the right to be informed.

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