The Health Research Authority is saddened to hear of the death of Dame Fiona Caldicott, the National Data Guardian.
Dame Fiona’s vision was that everyone who uses health and social care services should be able to trust that their personal confidential data is protected. People should be assured that those involved in their care, and in running and improving services, including carrying out health and social care research, are using such information appropriately and only when absolutely necessary. Her eight principles guide organisations, including the HRA, and underpin high quality health and social care research.
Professor Sir Terence Stephenson, HRA Chair‘Dame Fiona was an exceptional public servant who dedicated her career to protecting patients and the public, especially their data. Most recently Dame Fiona had been advising to the Government so that data sharing could help the response to the coronavirus pandemic. Her work has built confidence in the health and social care sector during a very difficult time, and we are lucky to have had the opportunity to work with her’.
Dr Tony Calland, Chair of the Confidentiality Advisory Group‘I have known and worked with Dame Fiona for well over a decade. She has been a shining beacon in the protection of confidential patient records but also their appropriate use. Her calm authority and gentle style was greatly respected by all those who worked with her. I know that all members of the Confidentiality Advisory Group will join me in our expression of sadness at the loss of such a wise and experienced colleague’.
Dame Fiona has always championed the principle that there should be ‘no surprises’ for the public about the use of their confidential information. Her drive to enhance public understanding of the use of health and care data is palpable throughout her work. The HRA welcomed the recent introduction of a new Caldicott Principle, focusing on the need to inform patients and service users about how their confidential information is used. It is a testament to Dame Fiona’s determination that people should know more so that uses of confidential data reflect their expectations.
The HRA has long enjoyed a valuable and close relationship with Dame Fiona, her staff and her panel. We are committed to continue working with the Office of the National Data Guardian to ensure that there are ‘no surprises’ for patients and service users about how their confidential information is used.