Dr Nicola Byrne has been officially announced as the next National Data Guardian for health and social care in England.
Dr Byrne becomes the second person to take up the role of National Data Guardian (NDG), following Dame Fiona Caldicott who sadly passed away last month and was instrumental in her time in post, helping to shape the way the NHS manages patient data.
The NDG’s role is to ensure information is kept safe and confidential, by offering advice, guidance and encouragement to the health and care system. The position was first established in November 2014 and legislation was passed in December 2018 to place the role on a statutory footing.
Over the next three years Dr Byrne will play a key role in The Caldicott Principles, updated last year, with further guidance to be published this year.
Dr Byrne has a background in psychiatry, with more than 20 years of practical clinical experience. She intends to continue in her post as a consultant psychiatrist at South London and Maudsley NHS Foundation Trust, seeing patients on a part-time basis. She has also held roles as the trust’s Caldicott Guardian and Chief Clinical Information Officer, but will leave these positions on her appointment as NDG.
Dr Byrne said: “I am delighted to take on this important role and determined to work to ensure that citizens’ health and care data is used to ensure the safety and quality of individual care, to improve the health of the population, and to support the longer term effectiveness of our health and care system through research and innovation in treatment and models of care.
“In doing so, I will do my best to honour Dame Fiona’s legacy, seeking always to speak up on behalf of citizens for trustworthy use of data, as she did with such integrity over the many years of her work.”
In April 2020, HTN reported on a newly introduced national data guardian programme, a partnership with Understanding Patient Data and Sciencewise to explore how people weigh up the benefits and disadvantages of health and social care data sharing for research.
The project was initiated before the COVID-19 pandemic, however the programme will explore the potential change in public attitudes, sentiment and knowledge as a result. The programme will also develop guidance to be published in 2021 to support a wide range of data sharing scenarios from across health and social care.
The guidance will assess how the public assess and weigh up the benefits of a range of scenarios to develop an understanding of what counts as ‘good enough’ use of data.
It will explore complex questions, such as: when might data usage benefit some groups of people, but not others? What if it’s uncertain what the results of a piece of research might be? What if it won’t benefit the people whose data was used, but instead others that are removed from the situation, live far away or won’t benefit until far into the future? How do these factors affect people’s attitudes towards whether there is enough public benefit to merit data being used?
Find out more about the National Data Guardian position on the dedicated government page.
