The European Liver Patients’ Association (ELPA) is a patients’ organisation promoting the interests of people living with liver diseases. ELPA has been a sustaining partner of EUPATI for over a year. As patients and patients’ representatives are more empowered when equipped with the right and relevant knowledge, ELPA has been supporting their members in the learning journey through the Open Classroom.
Currently, it is no less than 10 ELPA members who are currently involved in the cohort 5 of the Patient Expert Training. This training is teaching them about the medicines’ development process, covering the entire lifecycle of medicines R&D, from design and execution of clinical trials to regulatory processes and Health Technology Assessment. In addition to detailed information on each step of the process, the training also describes how patients can be involved at each stage.
Beatrice Credi is the Administrator and Content creator at ELPA. She has been the driving force behind the 10 ELPA members who are part of the Cohort 5 of the Patient Expert Training and here is her feedback on this experience so far:
How did you get started with the EUPATI Open Classroom?
ELPA is a EUPATI sustaining partner, and it was informed about the EUPATI Open Classroom. After an internal brainstorming, the ELPA President and Directors, with the support of the ELPA secretariat, decided to open a call among all the ELPA members and offer a scholarship that covered all the costs to all who wanted to enrol in the program and become a EUPATI fellow.
What were the educational needs you identified among your members?
ELPA represents members from 25 countries, some in the EU and some not. For many years we have been witnessing different possibilities in accessing educational opportunities depending on the country of origin of our members. Inhomogeneities in having the option of enrolling in high-quality pieces of training do not occur only between EU and non-EU countries but also within different countries that are part of the European Union.
This could seem like a mere political science exercise; however, these inequalities subsequently affect how national patients’ associations deal with industry and other stakeholders.
Therefore, ELPA thought that an official recognition as ‘expert patients’ could give our members more credit, influence, and leverage because knowledge is power.
Why do you think EUPATI Patient Expert Training is important for patient advocates?
I can give you an example. One of the ELPA members participating in the training, and already quite skilled and experienced, told me that, during an official meeting, at one point of the conversation, he mentioned a subject that was part of the content of the module he had just finished. His partner in the discussion was suddenly impressed; maybe he did not expect a patient to have such an understanding of a complex and specific matter.
In my opinion, this example summarises the reason why the EUPATI Patient Expert Training is vital for patient advocates. It is a way not to be underestimated or ignored. It is a means to say ‘nothing about patients without patients’.
How did you organise your study group?
My approach was very strategic and included the knowledge I gained during my educational and professional experience. When I was at university, I also used my organisational skills and strategic approach to help myself and my colleagues. In my first job after graduation, I dealt with the organisation of vocational training offered to jobseekers. The EUPATI education allowed me to re-use my knowledge and adapt it to a new setting, an online platform, and a different type of student.
Ten people from the ELPA network applied for the scholarship. I started organising a group call online, during which I shared some slides explaining how to use the online platform and access the content. The presentation also included a calendar where I divided all the courses throughout the year. I calculated one class per week with a break around Christmas and summer holidays. I also encouraged the group to exchange contact during the meeting, and we created a WhatsApp group chat. I recorded the session and sent the recording to people who could not participate.
Then, following the calendar, I started assigning the weakly task. Every Monday morning, the group received an email with the course to take. I also used the WhatsApp group and individual calls to help the members review their improvement and answer their questions regarding using the platform.
The calendar also included a meeting per month to assess the group’s progress altogether, the progress I could personally check in advance thanks to a table I shared with the EUPATI Secretariat, where she monitored person by person.
How did you motivate your members to study?
Studying is a very personal process. It is about motivation, organisation, and pace. From the beginning, I noticed that a structure and standardised system were not enough. I also needed to find a personalised approach because more variants I had not considered before entered the equation Age, educational and cultural background, English language proficiency, time to dedicate to the programme, and gender. Yes, gender. Participating in the first event was very challenging for some women belonging to the group because of family duties. In that case, the EUPATI Secretariat was crucial to finding a solution. In another case, I asked one of the students to be my messenger in motivating another. I understood it was a hard time for this student, and my intervention could have created the opposite effect.
What was challenging?
This balance to find between general and personal approaches was not easy to modulate. I wanted to avoid a patronising attitude while making everybody feel supported.
Also, it was not easy to keep the motivation high for an entire year long. Only with a planned, strategic, and intelligent approach, built up at the beginning and cleverly adapted or changed during the year, we successfully went through the programme.
What was helpful in the process?
The structure I built was helpful for the students and me: schedules, regular contacts, tools etc. It was a mix of structure and individual approaches that helped. Then, the constant contact with Ieva was also quite crucial for me to guide the group through the programme because I was always aware of the stage reached by each student.
However, nothing helped the entire group to progress more than seeing their signs of progress throughout the months.
What would be your recommendation for other patient organisations who wish to follow your example?
Whether there is just a student or a large group of people, keep listening and remain responsive to the need of the people from your organisation. I discovered that organising something like that could benefit the entire association. Not only in terms of acquired knowledge but also to strengthen the bonds within the organisation itself. An organisation can also ask ELPA for some support and we could do something together. This can also save time and energy. Do not hesitate to reach out to ELPA to find the right solution for your students!
More information on ELPA here
More information on the Open Classroom and the Patient Expert Training here.
Date posted: June 16, 2022