We did it – first c4c online Train the Trainers Workshop held!
The c4c Patient and Public Involvement (PPI) Team work to ensure that the voice and opinion of children, young people and families is embedded throughout the c4c project.
On 16 – 17 September 2020, the first virtual “Train the Trainers” workshop was held by the PPI team.
The aim of the workshop was to educate
- patients and patient representatives on the different ways in which patients can engage with the c4c project
- patient organisations on how to support patient/parent involvement in European paediatric clinical trials.
There was approximately 30 participants in attendance representing 20 paediatric diseases and patient organisations from 12 countries across Europe.
This diverse and experienced group led to interesting discussions on clinical trials and the involvement of children and young people.
Elena Mozzo, Penta, Italy.
What happened during the workshop?
To begin with, the question of “Why” and “How” children and young people should be involved in clinical research was addressed.
Although there are obstacles in paediatric clinical trials, participants were able to see that the c4c project along with Patient Parent Involvement (PPI) activities, such as those in the ongoing c4c trials; TREOCAPA and cASPerCF, are well equipped to address them.
The workshop also covered the moral responsibility investigators have to ensure that trials are being conducted in a manner that is not harmful to participants as well as how to overcome some common arguments (economic, technical and organisational) against child participation in clinical trials.
In addition to this, the group discussed the essential elements of clinical trial methodology, from design to follow up, with participants having the opportunity break-out into groups to review sections of a study protocol.
Throughout the workshop, participants were able to practically apply what they learned using examples from real life studies, study protocols, summaries from sample trials and discussions on regulatory and medicine approval such as those from the European Medicines Agency. And of course, a plenary session where comments and questions could be answered, helped ensure that everyone left the workshop feeling empowered and informed.
What are the key takeaways from the workshop?
The workshop was a great success and provided participants with the opportunity to network and understand how they can be involved in the c4c project. Some key takeaways for all clinicians, researchers and patient involvement organisations to remember are:
- Make sure the involvement of children and young people is feasible
- PPI needs to be an integrated part of the process from the beginning
- Design, execution and evaluation of every PPI activity is essential
- Share (good and bad) experiences of PPI so the effectiveness of these activities can be improved
- Show the added value of PPI in terms of outcomes and/or financial benefits
You can find some useful educational PPI resources here.
A huge thank you to all participants, speakers and moderators
we hope to engage with you all on an ongoing basis!