The Information Commissioner’s Office (ICO) has released new guidance aimed at enhancing transparency regarding the use of personal information by health and social care organisations. 

This move is intended to provide regulatory clarity on the proper disclosure of information, enabling individuals to better understand how their personal data is utilised and assessed for transparency levels.

According to the ICO, under data protection laws, individuals have the right to be informed about the handling of their personal information, especially when accessing essential services such as health care. The newly issued guidance emphasises the importance of necessity and proportionality in using personal data, as well as the need for data protection by decision, accompanied by safeguards to ensure information security.

Key aspects covered in the guidance include the development and provision of transparency information, as well as steps for self-assessment. This includes considerations such as assessing potential harms, identifying critical information for individuals, and assigning responsibility for delivering transparency effectively within organisations.

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

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“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 noted that the guidance incorporates feedback from health and social care organisations gathered through a public consultation earlier this year and it supplements existing guidance on transparency principles and individuals’ right to be informed.