Become a CAG member

“As an independent information governance (IG) expert I was drawn to the work the CAG do. Joining through the pandemic was incredibly fast-paced but it has been extremely rewarding because my knowledge of research processes has improved significantly. Being part of CAG has led to me be involved with various IG forums.”

“I became involved with CAG and its predecessor organisation because I believe that patients must be able to trust health care staff to keep their personal information confidential. However, when it is necessary in the public interest for that personal information to be used for purposes other than their care, it is only done in a rigorously controlled way that protects their confidence.”

“My experience as a medical academic journal editor left me with concerns that, despite best intentions, researchers were sometimes cavalier with patients’ or participants’ unconsented identifiable information. With the rapid advances in data linkages and public concerns about medical confidentiality, I consider it important that informed, independent scrutiny is needed to balance protecting patients’ and participants’ rights with supporting the public interest in the results of ethically approved research. CAG provides that scrutiny.”

“I became involved in the governance of confidential data to ensure that the balance between a confidential medical service and the appropriate use of medical records is open to public scrutiny, generates public confidence in the data use and is always in the interest of the wider public whilst using every technique to protect patient confidentiality.”

“The NHS has an enormous wealth of health data, we know that patients are generally very supportive of health research done for the right reasons but at the same time rightly expect that their data should be handled appropriately and securely and their confidentiality protected.

"Reviewing applications to ensure that these elements are respected and balanced is a fascinating and sometimes challenging task. Each application raises unique issues and the collaborative ethos of working on CAG has been a real pleasure. This has been one of the most intellectually challenging and rewarding roles in my years in healthcare.”

“I spent much of my professional career collecting, analysing and thinking about data and the uses and abuses of data. In joining CAG as a lay member I welcomed the opportunity of participating in a different aspect of data exploitation. I have found my time in CAG fascinating in terms of exposure to the vast range of incredibly valuable health research which can be undertaken using NHS data whilst reflecting on all the safeguards which exist to respect the privacy and safety of all NHS users. I really like the feeling that, through being a member of CAG, I am contributing to securing everyone’s confidence in the integrity of research using their data.”

“Membership of CAG has improved my understanding around how best to balance safeguards on confidential patient information disclosures, impact on individual’s privacy and data protection while enabling important life-saving research and audit to take place. As a professional member, it has given me a better understanding of the healthcare data sharing landscape, appropriate safeguards and ways to better use invaluable confidential patient data. It has been a rare experience to be so close to the public view and understanding in this area alongside some high-quality expertise in the HRA.”

I have been a lay member of CAG for 8 years, with a background in local authority social care and an interest in the use of data in improving public services.

I continue to be fascinated and amazed by the health research work in particular that comes to CAG, and the committee's role in enabling that work to progress by ensuring that personal health information is used legally and appropriately.

Lay members are an essential component of CAG, working with expert members to see that patient and public involvement and awareness are central to the process.

The committee works well because of the varying backgrounds and experiences of lay and expert members, alongside the excellent support from the Confidentiality Advice Team.

As a lay member of CAG, I find the work challenging but always interesting, and the main thing on my mind is always the public benefit. The staff team are incredibly supportive and help with any queries which helps to ease you into the role.

I have always felt valued as an equal member of the team, even though many of the expert members have more specific and relevant knowledge. As lay members, our backgrounds and experiences are all different which means that we can each offer an alternative perspective.

As a management consultant, I can draw parallels with how government and companies manage different types of sensitive data. Equally important is my ability to consider requests for data or research as a patient myself, as a father of two teenagers, and as someone with friends or family who have received physical or mental healthcare services.

Lay members also have a unique opportunity to learn at the leading-edge of data and health research, and it’s inspiring to review the latest research projects, consider how AI is transforming healthcare and engage first-hand with leading researchers in meetings.