Last December, the first students graduated from the Dutch EUPATI programme. How did they experience the training? What did it bring them? And how do they apply the knowledge they have gained, in their work as patient representatives? For Saskya Angevare, EUPATI NL student, the training brought her knowledge, a network and above all confidence.
“It was very exciting. But I did it. On 16 November 2020 I gave a presentation to the European Parliament. Together with a fellow patient advocate, we informed the European Commission about the experiences of patients with a rare disease, before and during COVID-19. Without the EUPATI training, I would never have dared to do this.
Awareness for rare diseases
I am a board member of KAISZ, an association for very rare autoimmune or auto inflammatory diseases. Because of the unfamiliarity with this rare disease, I have worked on awareness, awareness and awareness. Just to make it clear to everyone what this disease entails.
And then, one moment, you’re asked to have a look at an information leaflet about medication. That’s doable. But after this comes the request of advising on a clinical trial in drug development. Well, that’s a different story! After all, as volunteers in a patient organisation, we are all more or less self-made experts-by-experience. A request like that is pretty exciting then. Besides, where can you find the information you need?
At a time like that I think: either I let this pass and never do anything with it again, or I am going to develop and educate myself to be able to do this. I choose the latter and dive even more intensively into the literature.
Yes, this is it!
I had only just taken this decision, when EUPATI NL came onto my path. Through my other work, for the European Network for Children with Arthritis and Auto inflammatory diseases (ENCA), I came into contact with PGOsupport. When one of their newsletters is delivered on my digital doormat, my eye catches the announcement of… the EUPATI NL training. My first thought? Yes, this is it!
Especially for smaller organisations
Although my start of the training is in good spirit, those first 2 to 3 modules are quite tough. The level is high and the content seems to be primarily intended for larger patient organisations. But don’t let that scare you off. The EUPATI curriculum is just as important for smaller organisations. And moreover, provides you with the opportunity to build a useful network, especially with representatives of those larger organizations. We learn from each other, simply by tagging a colleague student every now and then on LinkedIn and Instagram, for example to point to relevant information and developments. That is why I fervently hope that EUPATI NL will be followed up after graduation.
Knowledge, communication skills and courage
In addition to new contacts, EUPATI NL brings you highly relevant knowledge and communication skills to do your job as a patient advocate even better. For example, you will learn how the process of drug development works with clinical trials, you learn to understand medical articles, and above all… you learn to communicate with researchers, healthcare professionals and other stakeholders.
When I previously was asked questions from that angle, my first thought would be: how do I get out of this? I didn’t think I had the knowledge to contribute to the discussion. Thanks to EUPATI NL, this belongs to the past. I know now that I can do it. Maybe on a different level, but I have a specific expertise that my stakeholders are in need of. EUPATI NL has also given me the courage to act upon this.
As an intermediary
Nowadays I try to be much more of a linking pin between researchers, health care professionals and the patients within the patient organization. That’s a very different position than the one I had before EUPATI. Previously, I was mainly a mouthpiece of the organization to create awareness. Now I’m much more of an intermediary partner. In addition, I can pass on the knowledge I have gained to other people in the organization. For example, the lessons on DNA. They are important to us because we represent a rare hereditary disease. With this knowledge, parents understand their child’s disease much better. And for example, the ‘elevator pitch’ about the condition, that I had to prepare for a training session is now in use by parents to explain about their child’s disease to teachers at school.
Knife cuts on both sides
Moreover, I can now explain to my colleagues how the process of drug development works, so that they understand why drug development takes so long, for example. Patients are very often involved in clinical trials and quite often it is not clear to the parents what it is all about. The doctor sometimes can’t adequately explain, or uses too many medical terms. Then I can provide them with additional information. So not only me, but actually our entire patient population may benefit from my knowledge from the EUPATI NL training.
Not for everyone
It is clear to me: I can wholeheartedly recommend the EUPATI NL training. But it may not be the right choice for just anyone. You really have to want it to the extreme. By this I mean that more than average motivation is needed to complete the training successfully. Do you have a real interest in this matter? Then the EUPATI training will bring you a lot: knowledge, a network and above all confidence!”
Date posted: February 24, 2021