Data regulator issues new guidance for health & social care organisations on transparency

By Martyn Landi, Reporter17th April 2024WebwatchData, Webwatch

The UK’s data protection regulator has published new guidance for health and social care organisations it says will help them be more transparent about how personal information is being used.

The Information Commissioner’s Office (ICO) said the new guidance would provide regulatory certainty to organisations on how they should keep people properly informed as technology is increasingly used to deliver care and carry out research.

The regulator said focus on the issue was needed as the health and social care sector routinely handles sensitive information about the most intimate aspects of peoples’ health, and that under data protection law, people have a right to know what is happening to their personal information.

Anne Russell, head of regulatory policy projects at the ICO, said the ever-increasing use of technology meant personal data was more important than ever, and so therefore was more transparency.

“Being transparent is essential to building public trust in health and social care services,” she said.

“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.”

The ICO said that the aim of the new guidance was to help organisations better understand how and when to keep people informed, supporting existing rules around transparency and the individual right to be informed about how and when personal information was being used.