ICO guidance on transparency published for health and care sector

The Information Commissioner’s Office (ICO) has published new guidance for the health and social care sector, to help improve transparency around how people’s personal information is used.

The guidance, published on the 15 April, will provide regulatory certainty on how organisations should keep people properly informed about how data is being used. It outlines how organisations can assess appropriate levels of transparency and provides practical steps to develop effective transparency information.

Anne Russell, head of regulatory policy projects at ICO, said: “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.”

With a huge volume of sensitive information being handled by the health and care sectors, the guidance will help organisations to understand the definition of transparency. According to data protection law, people are entitled to know what is happening with their personal information, something that is particularly important when accessing vital services.

The ICO guidance sets out how to provide transparency and privacy information, including the communication methods needed, and how to layer privacy and transparency information. It also outlines how to assess if an organisation is being transparent and how often to review its transparency information.

Russell continued: “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.”

The guidance incorporates feedback from health and social care organisations across the UK, following a public consultation earlier this year. It is published to supplement existing ICO guidance on transparency and the right to be informed.

The ICO has previously issued reprimands to organisations failing to secure patients’ private data.