Being a patient speaker: Interview with Theo Schilpzand
Theo Schilpzand talks to us about his experience of being part of a discussion panel at a scientific session at the ERS International Congress 2018 in Paris.
Can you tell us a little bit about yourself?
I am just over 40 years old, but there was a period when my lung condition was a lot worse than that of my father, who is twice as old as I am. That felt frustrating, as I enjoyed exercising, and sports like running and swimming. Also driving long distances on my motorbike was not possible when I was first diagnosed with severe asthma. At the moment, all these things - like sports, motorcycling, gardening and walking long distances with my wife and the dog - are possible again.
Can you tell us a little bit about your lung condition?
My history, prior to having been given the diagnosis of asthma, was extremely intense and extensive. Every patient with severe asthma knows the long journey to getting a clear diagnosis, often in the meantime living with severe health problems and hospital admissions. But ever since I ended up at the Academic Medical Centre in Amsterdam and was allowed to participate in various studies with biologicals, my health has quickly improved. When asked if I also wanted to participate in a panel discussion at the ERS to share my experiences, the answer was off course "yes"!
What exactly is a panel discussion?
A panel discussion is a debate in which experts are given the opportunity to discuss and exchange ideas with each other and with people from the audience. This session was accompanied by an experienced chairman, who fired various questions at the panel and gave the audience the opportunity to ask questions. On the one hand, it is exciting, because all kinds of questions can be asked. On the other hand, from a patient’s expert view, it is mainly drawing on one's own experiences. Therefore, there are no wrong answers.
How did you prepare for speaking at the ERS Congress?
The preparation and support of the European Lung Foundation (ELF) was great. Amongst other things, various e-learning modules on the European Patient Ambassador Programme (EPAP) site helped me gain knowledge of medical practices and processes, but especially the communication around the event was clear, helpful and friendly. Preparations took place via teleconference to get acquainted with fellow speakers, also with an extensive information package, and the offer of a guide at the event itself if I wanted; this gave me no reason for tension in the process prior to the event.
How did you find the experience overall?
Although the ERS 2018 was a major event (with around 22,000 world-wide experts in the field of lung disease treatment), after some preparation, everything was easy to find in the conference centre. It was well organized, not only at the location itself, but also on the website, which made it easier to prepare for my session and look for other interesting sessions.
What would you say to others who are considering becoming a patient speaker?
A little healthy tension can't hurt. And above all, speaking, or being a panellist for such an event is a fun and an educational experience that I would certainly recommend to anyone if the opportunity arises.