Awarded Data Manager of the Year at the recent CRN North Thames Awards, Jane de Tisi talks to us about the database she has built, how it supports research by the Epilepsy team at UCL and UCLH, and how her role is growing to include patient engagement in research.
Jane is Data Manager at the UCL Queen Square Institute of Neurology – with honorary UCLH status – in a BRC-funded role.
Can you tell us about your role?
My job title is Data Manager/Epilepsy Centre Coordinator, and I look after the database of people who have had surgery for epilepsy at the National Hospital for Neurology and Neurosurgery (NHNN) at UCLH, which we use for research and clinical audits.
My job has developed a lot over time, and it’s a lot more than about managing the data in a technical-type role.
So I’m probably not very typical of someone with my job title.
I now have a growing patient and public involvement (PPI) element as part of my daily work. I spend a lot of my time in contact with people who have had surgery at NHNN as part of our long term follow-up after surgery and work alongside our patient support group, Brain Buddy UK.
What’s the most enjoyable thing about your work?
It’s the human interaction and being able to hear directly from individuals and their families touched by epilepsy.
It is wonderful to hear how people’s lives can be changed after surgery. Recently I spoke to a man who used to have epilepsy, and became seizure free after surgery at UCLH and was able to stop taking epilepsy medication. He is now a long-haul lorry driver, and is so grateful to be able to do his job. Previously, he couldn’t drive his car, let alone work full time as a lorry driver. We have been in contact with each other for over 20 years now! Another chap likens me to his big sister who checks up on him every so often!
How did you get into your current role?
I’ve been at the Department of Clinical and Experimental Epilepsy, UCL since 2004 – first as an admin assistant, and over time the role has developed into my work with data – and more recently it has started to involve more PPI work. Since 2019, my role has been fully funded by the BRC.
I first started developing the data side 20 years ago. I had worked on databases previously, at the Department of Trade and Industry. At NHNN, we needed a way of following up people who had surgery for epilepsy to find out the long-term outcomes and to help us offer the right choices to people who were considering surgery and so I built our first database.
The database was modest at first including details of surgery types and demographic data. It then proceeded to capturing what happened to people as we followed their progress after surgery in the long term.
20 years later, I’m still working on the database!
How is the database currently used?
In line with current data regulations, it is now registered as a research database. Roughly two thirds of those who have had surgery have been discharged from our care and either do not require further input other than from their GP, or are being seen by their local neurology service. I send out questionnaires to these individuals asking how they are getting on, in terms of seizures, anti-seizure medication, their activities and quality of life. We ask for their consent to be contacted on a yearly basis. Their responses provide us with priceless information as to how successful surgery has been, which is helpful for clinical and research purposes. It also provides them with the opportunity to tell us anything else, such as how we can improve our service!
We now have over 1,000 patients in the database, with over 15,000 years’ worth of patient experience recorded in the data.
In 2011 and 2016, we published a paper in The Lancet and the Journal of Neurology, Neurosurgery, and Psychiatry respectively on long term outcome and patterns and what predicts surgery outcomes. In an upcoming paper, we’ll update our findings based on what we have learned since that time.
Aside from our own research, we now offer other researchers the chance to access data in the database so they can do their own research. We have a departmental Data Monitoring Committee (DMC) which reviews and approves these requests for data use.
The database also helps us with clinical audits and service evaluations.
Can you tell us about the patient engagement and PPI side of your job?
A few years ago, two individuals from NHNN who had had epilepsy surgery set up a support group aimed at giving people advice and information about the surgery. They both felt that they would have benefited from more advice and guidance at the time of their own operation. This group called themselves Brain Buddy (Brain Buddy UK) and they work closely with Profs Matthew Walker and John Duncan, with myself as support.
They now run quarterly talks throughout the year – 2 in person at Queen Square and 2 via Zoom - with the aim of putting people considering epilepsy surgery in touch with those who have had surgery through insightful interviews. At these events we also present our research at UCL and UCLH and get patient views on this research.
Our next plan is to set up an NHNN Epilepsy Registry, as a way of reaching out to individuals with epilepsy and invite them to be part of specific focus groups, panels etc, to help inform and shape our research.
Congratulations on being awarded Data Manager of the Year at the recent CRN North Thames Awards. Can you tell us about the award?
It was a great privilege to receive the award, and I am grateful to those who felt I was worthy of it. The award would not have been possible without the years of fantastic work undertaken by my UCL and UCLH colleagues in the Epilepsy team and our numerous collaborators – clinicians, academics, epilepsy nurse specialists, administrators, medical secretaries, statisticians, research assistants, local neurology teams in the UK and overseas – and of course, the hundreds of individuals who have had neurological treatment at the NHNN. Many thanks!
