The Information Commissioner’s Office (ICO) has published new guidance for health and social care organisations for transparency on their use of personal information.
It said this is intended to provide regulatory certainty on how the organisations should keep people properly informed by helping them to understand the definition of and assess appropriate levels of transparency. It also provides practical steps to developing effective transparency information.
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.
The guidance includes key considerations such as the necessity and proportionality of using any personal information and the need for data protection by decision, with safeguards to protect information.
It also focuses on how to develop transparency information, how to provide it, and steps for self-assessment. These include a checklist of considerations on issues including potential harms, determining what information is most important to people, and allocating responsibility for delivering transparency where it is most effective.
Essential for trust
Anne Russell, head of regulatory policy projects at the 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.
“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 the guidance incorporates feedback from health and social care organisations in a public consultation earlier this year. It supplements existing guidance on the principle of transparency and the right to be informed.
