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What are your impressions of the course?
Marleen, also known as Sparkles from Amsterdam, says, “the course is extremely well-organised. The course is available online 24/7, allowing you to study at any given moment wherever you are. A huge perk is the team behind it: basically we have access to live tutors 24/7 as well (editor’s note: maybe not 24/7!). Every module or chapter has specific tutors, people from the field who are considered top-notch in that particular field. The response time to a question & quality of the feedback is unprecedented.” According to Luc Matthysen, of Belgium (Belgian Pulmonary Hypertension Association), the “lessons are very comprehensive, and not too difficult to read (for those of us who are less than natives in English!). I think the course is complete and some subjects will get further discussion in our face-to-face meeting. Dimitrios Athanasiou (MDA Hellas) from Greece says, “for me, the course is necessary for any patient rep who is going to sit at the same table with other stakeholders and wants to be there on equal terms.”
Marleen, is it difficult for you to learn on the computer? “I do like the concept of learning on a computer. In all honesty I must admit I am moving more & more to the print version, as it is easier for the eyes, I like marking text for easy reference later and when I don't have internet connection I can still study. I'm sure this is a generation thingie ;-)”, she says with an emoji. For Luc, “Working on the screen for long-term like studying, is difficult for me, so I have printed everything out.” For Dimitrios, it is not difficult, “but it demands more self-discipline like any online course.”
Are the lessons understandable, might they seem confusing?
For Marleen, the “courses are understandable and there's always the glossary to look up specific terminology. (And d)epending on your personal background, some lessons are harder to understand than others. And, as with all studies, sometimes you need persistance to get through a specific chapter." For Dimitrios, “the lessons are understandable, yet terminology can be hard, especially in areas where the differences between the meanings aren't very great.”
Every lesson is delivered with additional materials for more insights into the theme. Marleen, are the additional materials useful for you? “It's a huge benefit to have the possibility to read the pre-selected further reading articles. Sometimes it clarifies a bit more the topic concerned or gives more in-depth information, sometimes it is a great hands-on example of a a current discussion / dilemma or a case-study. Quality of selected articles is high. So yes, most of them are very useful to me." Luc hasn’t started reading the additional materials “as there are so many hours in the day”. According to Dimitrios, “It depends on the difficulty of the issue discussed. In complex contents the additional materials are very helpful!”
Which themes have been most interesting or least interesting for you?
According to Marleen, “For me it is not one or two themes specifically, the most interesting part to me is putting the theory into practice. Having read on a certain topic and by chance you get a request from the field (e.g. to participate in an international consortium) on the topic you just mastered. Fascinating! The only negative is the lack of vocabulary going into specific areas.” Luc agrees, saying “For me, the ‘clinical trials’ subject was the most interesting personally, while the most difficult was the subject about genome and -omics , and of course statistics, like always!” Most interesting for Dimitrios was, “Basic biology and regulations”. Nothing has been too hard!
Are there things that you see as missing?
Marleen misses the “interaction with other students, to discuss about a topic, to see how it is arranged in other countries, other organisations. But that will happen in Barcelona!” For Dimitrios, it is perhaps, “case studies from real life, like perhaps an "edited" proposal for discussion at EMA from the industry, either for scientific advice or the CHMP board.”
What do you expect from this programme?
Marleen wants "to be "a well-informed stakeholder" when talking to other stakeholders, e.g., researchers & pharma. "The knowledge acquired will help level me as I talk to the various stakeholders in the clinical trials process. I trust I will then be a more interesting party to talk to for them". Dimitrios says, “To educate me enough in order to be able to evaluate information and situations that I know I will face in the future.” According to Luc, “We will be better patients' advocates because we have much more understanding of the whole process. It will be much easier to follow discussions from doctors and researchers.”
Will the programme help you be a stronger patient advocate?
According to Marleen, “Absolutely, in so many ways; not only by learning the basics (terminology, various aspects of a clinical trial, etc), but also the huge 'learning curve beyond the lessons themselves, meaning the discussions, the thought processes, putting knowledge into practice. Dimitrios concurs, adding, “Definitely, it will help me be an educated patient and a better negotiator for my community.”
What do you expect from the next lessons and the final face-to-face meeting in Barcelona?
Marleen, “From experience I can say you never know what the next lesson is going to bring you! ;-) I do think as we progress further, it is great to know more about the whole drug research and development process from start to finish. Besides meeting up my peers again, I trust the meeting in Barcelona will be a time to discuss various topics more in depth and get the various points of view based on experience, cultural background, personal preferences, etc.“ Luc adds, “The meeting will be the place where some sensitive subjects can be discussed (use of placebo, informed consent, and on 'even if there are rules, not everything (always) runs smoothly during a clinical trial')”. Dimitrios says, “Basically in the face-to-face meeting I am expecting to experience exchange and networking”.
Is there a feeling or a concern of too much “pharma influence”?
The first patient representatives in the Patient Expert Training Course of our project stress the excitement of having tutors from different areas of health care. Moderators and facilitators come from patient groups, the pharmaceutical industry and universities, and all are valued by the students. “Each person responds according to their experience and perspective and that brings a level of understanding much higher than if we were being taught by only one of those ‘stakeholders’," says Luc. "I have not felt the “presence” of pharma and certainly no undue pressure", agrees Dimitrios.