New volunteers for confidential patient information advice group

Last updated on 26 Apr 2023

The Health Research Authority (HRA) has recruited six new volunteers to provide advice on confidential patient information.

The new volunteers have joined the Confidentiality Advisory Group (CAG). The CAG is an independent body made up of volunteers, which reviews applications for research purposes and provides expert advice on the use of identifiable patient information without consent to the HRA.

The CAG also provides advice to the Secretary of State for Health and Social Care for non-research uses.

The purpose of CAG is to protect and promote the interests of patients and the public, while at the same time facilitating appropriate use of confidential patient information without consent for purposes beyond direct patient care.

CAG members are a mixture of health and research experts and lay members, who have an interest in and experience of healthcare as a patient or a carer.

The new volunteers are expert members and come from a range of health, research and AI backgrounds. They are:

Thomas Boby

Thomas' career has been centred around building software for medical research across both the public and private sector. His recent work uses artificial intelligence in medical devices, and he has a growing interest in the complexities around the use of patient data in machine learning.

Sarah Palmer-Edwards

Sarah is the head of information governance and data protection officer at Barts Health NHS Trust. As a qualified archivist and records manager, as well as data protection officer, Sarah has a keen interest in the use of information and data throughout its full lifecycle, ensuring protection of and access to information is balanced and considered.

Dr Ben Gibbison

Ben is associate Professor of Cardiac Anaesthesia and Intensive Care at the University of Bristol and Honorary Consultant at University Hospitals Bristol and Weston NHS Foundation Trust. Ben was a full-time NHS consultant, before moving to be an academic in 2018. He now cares for people before during and after cardiac surgery for half of his time and conducts research for the other half. His research includes physiological mechanisms, data science and applied clinical research.

Professor James Teo

James is a Professor of Neurology at King’s College Hospital, and Clinical Director of Data Science and AI at King’s College Hospital and Guy’s and St Thomas’ NHS Foundation Trust. He has extensive experience in data science research, including machine vision and clinical natural language processing, as well as clinical trial governance and continues to be a practicing clinical neurologist treating patients with stroke and neurorehabilitation.

Dr Joanne Bailey

Joanne was a GP in Hertfordshire for 27 years where she became interested in clinical ethics, gaining an MA in healthcare ethics in 2002. Joanne is also a member of the National Data Guardian’s advisory panel, a tutor in clinical ethics and law at University of Cambridge, a First-tier Tribunal Member in the Social Entitlements Chamber, and gained an LLM in medical law in 2021.

Dr Stephen Mullin

Stephen is an Associate Professor of Neurology at the University of Plymouth and consultant neurologist. He has a background in neurogenetics in Parkinson’s disease. Increasingly his research is focussed on the use of advanced bioinformatics and artificial intelligence to improve clinical care and answer research questions using routinely collected medical data.

Dr Paul Mills, confidentiality advice service manager, at the HRA said: “We’re delighted to officially welcome our six new CAG members to the HRA. We are so thankful to them for giving their time to make a difference.

“Our new members bring a wealth of talent and experience from the research, AI and medical sector and will provide invaluable support to the CAG and the wider research community.”

Tony Calland

The CAG plays an essential role in ensuring that the use of patient medical records for research and NHS improvement is in the public interest. The scrutiny involved in this work requires a range of skills, the lay members of the committee bring the essential views of the general public and they are supported by a number of expert members who have a wide range of expertise and experience from the NHS, medical research and medical computing.

The six new expert members have been chosen for their knowledge of the latest developments in AI, computing systems, information governance and confidentiality and research using digital systems. The CAG look forward to working with them in the new extended team.

CAG Chair Tony Calland
Sarah Palmer-Edwards

When I saw that CAG were looking for expert members, I knew that it would be an opportunity to build on the knowledge that I already have, and to gain a greater understanding of the bigger picture by seeing proposals from projects from across the country.

At first, I wasn’t sure whether to apply, having a busy job and young children, but could see how flexible the arrangement was and I was impressed that the roles have been made so accessible. During my induction I felt welcomed and supported and it was immediately evident that each member’s input is valued.

New CAG member Sarah Palmer-Edwards

After receiving training, the new members officially began their roles in April 2023.

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