Dan Roulstone, lay member of the Confidentiality Advisory Group (CAG)
It’s an exciting time for healthcare research. New uses of data and the application of Artificial Intelligence to large volumes of data are already improving care and could lead to further scientific breakthroughs for our health and wellbeing.
And yet, surveys show that many within the UK population remain nervous about how their personal health data is used without their consent. Unsurprisingly, people assume that information shared with their doctor remains confidential, particularly where data could be linked to them.
In this context, the Confidentiality Advisory Group (CAG) is critically important. CAG reviews individual requests for data-sharing and advises the Health Research Authority (HRA) and the Department of Health and Social Care (DHSC) on the right balance between patient confidentiality and the needs of health research.
I joined the CAG as a lay member in the spring of 2021 in the second half of the Covid-19 pandemic, when the importance of healthcare research was clearer than ever.
I was initially struck by the level of rigour and scrutiny applied to any access to identifiable information by someone outside the care team, even for data preparation activities.
Before joining CAG, I had no idea that in most cases, data has been anonymised when ultimately received by researchers for analysis.
Contributing to a trusted use of health data in the UK is genuinely rewarding and I have thoroughly enjoyed my three years. Here are a few personal insights for anyone interesting in applying to CAG:
The added value of lay members is that they are not health data experts (although it’s good to have an interest)
I see first-hand the value in considering how an average person on the street might react to a request for access to their healthcare data. Building public trust in the use of health data can only be achieved if it’s explainable and transparent to all.
Lay members inject alternative perspectives from their professional and personal lived experience
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 have a unique opportunity to learn at the leading-edge of data and health research
It’s inspiring to review the latest research projects, consider how AI is transforming healthcare and engage first-hand with leading researchers in meetings. Bi-annual face-to-face sessions are used to discuss strategic questions, and we also often benefit from expert presentations (e.g. NHS England, the National Data Guardian as well as DHSC). The members of CAG form a welcoming community with a wealth of knowledge to share.
Lay members benefit from a highly flexible and supportive system
Expected to attend seven meetings per year (with additional preparation time), we receive excellent support from the Confidentiality Advice Team in managing availability for meetings and responding to questions on individual cases. This enables me to be an active member of CAG, alongside a busy job and active family. My employer, BearingPoint, understands the social value this volunteering role brings to society.