Patients and Citizens Advisory Group
PCAG members
Working groups
- PCAG general meetings
- Validation of the PIPPI platform
- Communication & Stakeholder engagement
- CoP development & Unmet need process
PCAG general meetings
Practical introduction to the platform and the CoP where they will be asked to bring their own challenge and introduce it. Moreover, the technical testing of the platform will be also be performed with the support of platform developers.
Validation of the PIPPI platform
Aim: test the usability of the platform and give feedback to the developer for further improvement. It will be 1h individual session.
Communication & Stakeholder engagement
Preparation of PCAG page, aims, message & channels
Aim: learn the best manner to communicate with citizens and patients from our advisory group. Preparation of their webpage as a manner to share with the CoP.
How to engage patients & citizens? How to initiate them in the process?
Aim: Learn the best manner to introduce patients & citizens in the CoP.
Preparation of testimonial series (in-house work with support from PIPPI group)
Aim: to create digital material sharing the learning process through PIPPI platform & CoP from patients&citizens view. It will include 4 videos at day 1, 30, 60 and 90.
- Day 1: expectation, first impression
- Day 30: learning & observation
- Day 60: improvement
- Day 90: how it is different now
Preparation of a patient workshop or other initiatives that may come from PCAG working group suggestions
Patient and citizens topics to discuss
The communication working group has developed some ideas to start generating some contents to organize how the PCAG wants to set their own voice and ways to engage.
The following is the an illustration of some of the things that were expressed in that meeting, to serve as a starting point to define the way patients and citizens co-create this space.
Citizen’s health
Expert patients
Patients’ participation on this CoP should start by defining some roles in terms of the kind of help that an expert patient might be able to provide.
New patient
When you get your diagnosis the life of a patient takes a new spin. This is a complicated moment that each patient lives in their own way. Some tools and ideas may be helpful for new patients.
Here’s the full illustration of the notes taken on that meeting for your review!
