Last Autumn, we appointed Professor Lorna Fraser as Chair and Dan Roulstone as Vice Chair of the Confidentiality Advisory Group (CAG).
Lorna, Professor of Palliative Care and Child Heath at Kings College London, has been a member of CAG for 10 years. Dan has been a member for 5 years and is a management consultant who has held senior policy, strategy and corporate service roles within the public sector.
They talk about how their experience as CAG members has prepared them for their new role on the Chair team, their hopes for the future and why the work of the group is so important.
Professor Lorna Fraser, CAG Chair
Professor Lorna Fraser, CAG ChairCAG plays an important role in the governance of confidential patient data, and it is a privilege to be given the opportunity to Chair the group at such an important time.
The types of applications that we are asked to consider are increasingly complex, using very large datasets, often with AI technology. There are also changes ahead in how confidential patient data is being accessed and used with the development of the Health Data Research Service, and associated changes.
As an independent committee who advise the HRA, Secretary of State for Health and NHS England, I hope that we can have a role in shaping these changes, whilst continuing to balance public interest, patient confidentiality and importantly maintaining public trust.
As a senior academic, I have a responsibility to play a role in the infrastructure that supports research and development and I am really pleased that I can do that through the group.
I became Chair on my 10th anniversary of being a CAG member, so have had the benefit of working with many excellent CAG members and Chairs over the last decade. It has been a busy few months and I am really grateful for the support of the Confidentiality Advice Team during this transition.
Dan Roulstone, CAG Vice Chair
How has your role as a member prepared you for your new role?
I joined the Confidentiality Advisory Group (CAG) as a member in February 2021 and 5 years’ experience of applications will really help me in my new role as Vice Chair.
My experience listening to, and learning, from my CAG colleagues has given me:
- an understanding of different people’s perspectives on the use of their data
- some insight into how to strike the right balance between enabling data flows and public trust in the use of their data; and
- a toolbox of questions to apply to new situations.
Describe the importance of having a lay voice in the Chair team
A successful CAG must help maintain the trust of the public, reassuring someone on the street that their identifiable data is used appropriately for research or other uses, with safeguards and choices in place.
In that context, the lay voice is critical amongst the Chair team to help assess whether projects are in the public interest, make sure communications are accessible and that engagement with the public on these issues is meaningful.
How was your first meeting as Vice Chair?
The value of CAG lies in the diversity of the views on the group and the rigour that we analyse complex requests to access identifiable data without consent.
My first meeting as Vice Chair showed that it can be difficult to predict which applications will need more or less time for conversation. We ultimately came to a good consensus on the different applications being discussed, with the CAG members providing valuable insights along the way.
I was very grateful for the support from the Confidentiality Advice team as well.
What are you looking forward to working on as Vice Chair?
The next few years will see new developments in the use of health data in the UK, as well as further technological advances with AI and other solutions. I’m looking forward to working with my colleagues to help the UK take advantage of these opportunities in the right way that maintains public trust.