Tributes have been paid to Dame Fiona Caldicott, the first National Data Guardian (NDG) for Health and Social Care, who has passed away aged 80.
Dame Fiona, who celebrated her 80th birthday in January, was appointed to the office of the National Data Guardian in November 2014 and was confirmed as the first statutory holder of the position in April 2019.
A tribute written by John Carvel on behalf of the NDG panel and office team was posted on the gov.uk website on February 15.
“As members of the team who supported Dame Fiona in her work as National Data Guardian for Health and Social Care, we are full of sorrow at losing our inspirational colleague,” Carvel wrote.
“She led us with unswerving integrity, modesty and a commitment to doing her best for patients and service users. Her name is well known across our sector and beyond, but we had the added privilege of knowing her personally and holding dear the thoughtful, compassionate person behind the public profile.”
Matthew Gould, NHSX’s CEO, said on Twitter “we owe Dame Fiona a great debt of gratitude”.
“She tackled the thorniest of subjects with wisdom, kindness and skill,” he added.
of the public, taking the NHS on a journey that has left us dramatically more aware of the importance of patient privacy, more able to make safe use of data to improve care. We have lost a decent and consequential leader, and my team & I have lost a treasured colleague and friend
— Matthew Gould (@matthewsgould) February 15, 2021
While NHSX’s CCIO Dr Simon Eccles said Dame Fiona always had “the interests of patients at heart”.
Few people in our lifetime will have such a lasting personal legacy. And always with the interests of patients at heart. https://t.co/s2YIM7y5Pe
— Simon Eccles (@NHSCCIO) February 15, 2021
Caldicott Review
As well as being the first National Data Guardian, Dame Fiona was also appointed to lead a review of how patient information was protected. Published in 1997, the Caldicott report included six Caldicott Principles for sharing personal confidential data and established that confidential information should only be used when absolutely necessary, for a justifiable purpose, within the law and on a strict need-to-know basis.
The Caldicott report in 1997 also recommended that NHS organisations should each appoint a “guardian” to uphold these principles- these later became known as “Caldicott Guardians”.
Then in 2012-13, Dame Fiona was asked by the Government to lead a second inquiry known as the Information Governance Review. The aim of the inquiry was to find an appropriate balance between the protection of patient information and the sharing of information to improve care. The result was a seventh Caldicott principle which concluded that “the duty to share information can be as important as the duty to protect it”.
Her recent work included advising the government about temporary relaxation of the normal rules to permit more extensive data sharing to combat the coronavirus pandemic. This led to the eighth Caldicott principle – putting a responsibility on professionals to inform patients and service users about how their confidential information is used.
In his tribute, Carvel says Dame Fiona was “preparing to complete her extended term as NDG at the end of March 2021 and wanted before then to make the first use of her statutory powers to enhance the authority of Caldicott Guardians”.