Hearing from the students
With so much depending on the new patient expert training course, the workshop was keen to hear how things were going. Niels Westergaard of Biopeople, University of Copenhagen, Denmark, involved in producing the concept for this course, was also one of the trainers. He introduced an interactive session on the course, moderated by Rob Camp, the Communications Coordinator of the European Patients’ Academy. Westergaard gave a brief introduction, talking about the “paradigm shift”: the move to put patients at the heart of the entire process of medicines development.
EUPATI’s vision for 2020 is of a society where patients are active “from A to Z”. The key outcomes will be better health for all, making sure that investment goes “to the right place at the right time”, a true partnership of all stakeholders, and patients “actively and systematically involved” in all stages of medicines research.
The expert training course combines E-learning with face-to-face meetings (the first had taken place in Barcelona a few weeks before the workshop). Westergaard explained that the first 50 students had already completed two of the six modules, and were moving through the third and fourth modules. Their course ends in December, by which time the second tranche of 50 students will have started. How are the students finding it so far? To find out, he and Camp were joined on the stage by three students on the expert course: Dimitrios Athanasiou from Greece, Peter Lack from Switzerland, and Sharon Thompson from Ireland.
Camp kicked off the discussion by asking the three why they had signed up, and what their expectations had been. The answers varied tremendously. “I signed up in ignorance, to be honest,” admitted Thompson. Her daughter had recently died from a rare dystrophy, and she received an email about EUPATI. “And I thought, Why not?” Her goal was to learn more about the involvement of patients in medicines development. She was also conscious that many patients need less medical jargon and more interaction with the people who have the means to make their lives better. “So my expectation was that I would learn more. I didn’t realise how much more!”
Reviewing the reasons
Lack was introduced to the idea of the course from a group he was already working with. Already involved with patient organisation Childhood Cancer Switzerland, he could see the potential of patient involvement – “but I also saw the requirements”. Like Thompson, he felt he needed to know more about the process, as well as basic medical information. Unlike Thompson, he had already taken part in a previous patient course led by Eurordis, driven by a desire to see how other patient groups worked with industry and academia. What he wanted from EUPATI was to develop the ability to review research projects critically.
“My motives were very egoistic and personal,” said Athanasiou of Greece, “because I have a son with muscular dystrophy.” We have to be informed to protect our loved ones, he said: “Usually naïve patients are the ones who die first.” And, he said, he is getting what he needs: information he can use, and is using. “We can exchange and learn from each other,” he said. Injecting a note of urgency, he noted that progress is rapid – but “we need to move a little faster”.
From the floor, course student Noirin O’Neill, from the United Kingdom, said she was one of the lucky patients, having been able to take part in a trial for acute myeloid leukaemia ten years ago. Since then she has spoken at conferences about excellence in medicines, and hopes that the course will help her to make a contribution at the European level.
Bringing it back home?
That was a cue for Camp to ask about the national level – halfway through the course, did the students think what they are learning would be helpful locally? “Sure. Definitely,” said Lack, although he noted the need to know more about legislation and regulation in Switzerland, not part of the European Medicines Agency system.
Lack then opened up what proved to be a theme of the workshop: the relationship between the expert course and the development of National Networking. “For me EUPATI is more than just this course, it’s really about patient involvement.” Switzerland has a National Team already, but there is a long way to go, he said. “The idea of patient involvement and its added value doesn’t really exist.”
Greece lacks the backup of a National Network, said Athanasiou, so everything takes more time – and has to be sustainable from day 1. “We try to handpick the willing in order to move forward,” he said, looking to international companies to provide “more willing and open-minded partners”. He saw the information he is learning as “very important” at national level, enabling him to train others. “We have to be focused on training local patients,” he said. But with developments taking place rapidly, he noted the need to “work harder on updating information”.
Thompson had yet to reach a conclusion about the extent to which what she was learning would help build patient involvement in her country, Ireland. “What we would bring back I don’t know. I suppose the first thing you learn is not to volunteer!” she confessed slyly. Patient representatives are often cautious about what they say, how they say it, and how they engage. “You often don’t want to rock the boat,” she noted. “I think it is very difficult for us to know how we are going to make a difference. That’s why we joined EUPATI – to get pointed in the right direction.” She hoped that becoming trained and recognised would make students more visible. “Although we don’t want our hands held, we do need a certain engagement from partners at a national level. People have to come halfway to meet us.”
This is major!
Other students came forward from the audience with their views. Carol Hagan, from the Tuberous Sclerosis Association, United Kingdom, halfway through the course, she had now realised she was “part of a huge thing”, and was developing a vocabulary and confidence. And a National Platform is clearly not the end of it: “We have a National Network in the making, but the playing field in the UK about access to medicines is not level yet.”
Alwyn Rowlands from Cynws Pobl/Involving People, United Kingdom (“but really Wales”) said she is taking forward a “vast fund of knowledge, sometimes too much, but everything is relevant”. She intends to pass on her knowledge to a new body, Healthwise Wales, which is being set up to involve patients in research.
For student Pedro Montellano from GAMIAN-Europe, Belgium, one of the most valuable outcomes is the network. In particular, learning how problems have been overcome in other countries makes it easier to implement changes in our own countries, he said.
Paul Carey from Move4Parkinson’s, Ireland, a patient advocate himself, professed his admiration for the students taking the course. “We need you to come back enthused, to show us what we can do,” he said. “It has to percolate down to my level, to Parkinson’s patients.” Carey was clearly looking to the students to make a difference at national level. “What we need from you is to find a way to get a paradigm change in the way our ministers and our organisations think.”
EUPATI student Russell Wheeler from LHON UK, United Kingdom, declared himself as representing “the elephant in the room”. He called for a radical seventh module: “the health system in Europe is broken. EUPATI is teaching the system that there is… We have to go further and find ways of changing the system.” Wheeler said he was worried that he would become “part of the system”.
Is being a patient advocate “cosy”? It certainly worried Thompson, and Lack also said he could relate to Wheeler’s concerns. He referred to a thin line between cosiness, which might have the potential to create partnerships between academia and industry, and being too cosy. “For me it’s not so clear yet how we achieve the best results.” On the other hand, one of the things Lack appreciated about EUPATI – “perhaps because we are cosy” – is that patient groups are learning that they can achieve more together and perhaps “work to change the system” – but that they have to collaborate with each other, learning what is in the interests of patients and patient groups in the long run.
Perhaps the answer is that you have to be able to rock the boat some times and keep it steady at others, said Camp. “One thing I learned from our Director, Jan Geissler, is the concept of ‘disrupter’. I really like that word. Sometimes you work within the system, sometimes you really have to rock the boat,” he said.
Now that the students were halfway through, how did they see the “road to the finish line”, as Camp put it? “I’m pretty happy with the pace of learning,” said Athanasiou – and happier after the face-to-face meeting in Barcelona, where the motivation he received from other students “recharged my batteries”. Thompson noted that you could do the online course at your own pace, and talked about having “a great time” in Barcelona. “EUPATI brought us all together and has shown us that a lot is happening for patients in Europe.”
Lack said he was looking forward to the next modules and in particular the next face-to-face event. The event in Barcelona sparked off ideas about what to do in Switzerland – “you don’t get that in e-learning”. He also mentioned the need for information resources that students can access once the course is over. He was happy to hear about developments in relation to the online library, but he wanted EUPATI to go further, with forums where patient representatives can discuss problems they are encountering.
Montellano, too, was looking forward to the final six months. From the floor, he again emphasised the importance of what happens next. “You get all this training and information, and then you put it into practice.”
Finally, it was left to Westergaard to sum up. The project has really moved on, from an abstract idea to real students, the first face-to-face meeting – and the first feedback. “We are well aware that everything is not perfect,” he admitted. “We still need to make adjustments.” But above all he appreciated the positive attitude shown by all the students.