Written by the Understanding Patient Data team. 

We were very sad to hear that Dame Fiona Caldicott has passed away. Dame Fiona’s commitment to championing people’s data rights in health and care has been an inspiration to us and many others. As a team, we wanted to take a moment to recognise the invaluable contribution she has made to our field.  

Back in 1997, Dame Fiona led the landmark review into the use of confidential patient data which resulted in the Caldicott Principles. The principles set the standard for health and social care information governance, ensuring that data is kept safe and used appropriately. It is fitting that Dame Fiona’s influence and name will continue on through both the principles and the large network of Caldicott Guardians who uphold them.  

Dame Fiona’s steadfast commitment to patient choice and robust information governance led to the creation of the National Data Opt-Out. It was a challenging task, with so many different views and priorities to consider but Dame Fiona led this crucial work with the patience and strength it required to ensure people were offered a meaningful choice about their health data. In 2018 with cross-party support the National Data Guardian role was placed on a statutory footing, ensuring this vital role will continue and cementing Dame Fiona’s legacy.  

Understanding Patient Data wouldn't exist without Dame Fiona’s foundational work, enduring influence and strong leadership. We feel very fortunate that we’ve had the opportunity to work with her, and are indebted to her and her team for the support and guidance she’s given us over the past few years. Our thoughts now are with her family, friends and colleagues.