EDITORIAL OF THE PATIENT ADVISORY COMMITTEE
17. October 2017
The members of the PAC have attended the INNODIA Year 2 meeting in Cambridge in September 2017.
The first positive point was the opportunity to exchange more in depth with the clinicians and nurses of the clinical Centers. The topic were the “tools” created by the PAC to have more type 1 diabetes patients and 1st degree relatives joining the study.
The PAC initiated, created and produced a number of pragmatic tools such as:
1. A location based “webmap” helping patients and relatives to locate precisely the clinical Centers in Europe and having the possibility to check with key criteria their eligibility for participation
2. Informative tools as videos and interviews explaining the importance and the objective of the project including INNODIA coordinators, members of the PAC (These videos show their drive to participate in the project and share their experience in living with T1D on the one hand and have a normal life with work, study and sports on the other hand) and INNODIA stakeholders
3. An animated video for kids from 5 to 8 years old
4. An interactive booklet explaining with a cartoon character that participation and giving samples is important. (The hero of the video and the booklet is a character, called “Delta”, specifically created for INNODIA project).
Some of the above mentioned videos are available online in this website, the other reserved to the clinical centers .
The second very positive aspect of the presence of the PAC at this year 2 meeting was the possibility of discussion with the leaders and researchers of the “Workpackages”. The PAC really appreciated the poster session and the discussion with the young researchers who were very eager to explain what they have done.
A point of improvement for most scientists is to explain the goal, progress and relevance of their complex work in plain English. The PAC asked to get information in a way it can be communicated to the bigger T1D community.
The PAC was specifically impressed by the two new and promising biomarkers discovered for beta cell imaging, the data warehouse and infrastructure put in place for analysis of the data in the coming years and the approach of measuring immune cells as a way to predict future changes in how well the body makes insulin…
PAC members came back home hopeful and energized by all the work accomplished since the start of the project and the growing impact of the “patient’s voice”!