Thomas Langford is a Health Technology Assessor at King’s Technology Evaluation Centre (KiTEC), a research centre at King’s College London which conducts research into medical technologies on behalf of the National Institute of Health and Care Excellence (NICE) and other organisations.
Rare Disease Day is an international event raising awareness of rare diseases, highlighting some of the research currently being conducted and how it will impact patients in the near future. This year, there were over 400 Rare Disease Day events around the world and one of these took place in St Thomas’ Hospital, London.
This was the first time I had taken part in a public engagement event. I took part with my colleague, Jamie Erskine, who is also a Health Technology Assessor at KiTEC and we presented an upcoming research project we are working on about idiopathic membranous nephropathy, which sympathetically to anyone trying to pronounce it, is just referred to as IMN. It is estimated to affect between 60 and 90 people in the population of Greater London (that’s only 6-9 people in a million; which is very rare indeed).
IMN is a disease which causes the immune system to produce antibodies that attack the kidneys. This means people with IMN gradually lose kidney function and end up requiring a kidney transplant or dialysis.
Our project is running through NICE’s Commissioning through Evaluation programme, which allows specific patients access to promising, experimental treatments that are not currently available on the NHS. People with IMN in England are being offered a drug called Rituximab, which preliminary studies show might be beneficial for patients who are not responding well to conventional treatments. You can read more our work in this article on the Biomedical Research Centre’s website.
St Thomas’ has just opened a fantastic new Rare Disease Centre treating rare complex and genetic conditions on a national scale. We toured the facility as part of the day and were amazed by how purpose-built and peaceful it was. Amenities such as family rooms and an outdoor space being developed into a garden show a level of care beyond that which is traditionally expected and will improve patient experience.
The day also provided great experience in talking about our research to a range of audiences; patients, clinicians and fellow researchers while raising money for the Rare Disease Centre through donations and a cake sale. At KiTEC, we have a really diverse workload and are constantly collaborating with various clinicians and academics. Taking part in an event like Rare Disease Day is a great opportunity to meet researchers working in the Trust and hear about the excellent work they are doing, which may in the future, lead to further collaborations.
There were a couple of hiccups on the day. Mostly due to the heavy snow, leaving our poster stranded at Guy’s Hospital rather than St. Thomas’! When the poster did arrive, it had been printed quite small in comparison to everyone else’s and the lateness meant space to put up our display was limited. Luckily, some very friendly nurses let us share their board. We also had a pair of kidneys 3D printed, but these turned out rather small too!
All in all, it was a great experience meeting patients and finding out more about the hospital and the clinicians and researchers who support it. I would definitely recommend taking part in public engagement events as valuable experience in communicating your research to a range of audiences and gaining a new perspective on it.