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ERS International Congress: Martine Puhl, the patient's perspective part 2

Martine Puhl represented U-BIOPRED as a patient advocate at the ERS International Congress. Here, she gives some insight into the U-BIOPRED symposium that took place at the event.

The U-BIOPRED symposium took place on Monday 8 September, where five very interesting presentations about the project were presented.

The session was organised in a very large room. And it was full. Crowded!

U-BIOPRED is now at the stage where people are interested in hearing about preliminary results. And there are very exciting results already.

A glimpse of the data on specific biomarkers in the U-BIOPRED study participants with severe asthma was presented. Could this be the first step towards more personalised medicines? The information about computer modelling for severe asthma in the project AirPROM was also very promising. It led to  the questions:

The presentation by Scott Wagers of BioSci Consulting was also very interesting, because he highlighted the behind-the-scenes processes and collaborations of the U-BIOPRED project.
The kinds of things that everybody in a big organisation or project will experience and struggle with.

I admire the focus within U-BIOPRED. Scott highlighted the course of the collaboration through the years with the sheer number of telephone calls held. And, most important to me as a patient representative, he also highlighted how patients have been, and continue to be, involved in this process.

He also pointed out how to overcome the well-known ‘dip’ that everybody who works on an innovative project faces. It all starts with a strong shared vision, with people who are adaptive, with ongoing communication and with facilitators, who were essential to U-BIOPRED.

And finally, our representative, David Supple, was asked to talk about the patient perspective within U-BIOPRED. He talked about the lessons learned, both negative and positive.
I strongly hope that his messages will be considered for new projects with patient input. Because, if you want good input from patients (a very diverse group), this has to be supported. You need budget, time, and dedicated people.

I’d like to end with the Thomas Edison quote from Scott’s presentation:

“hell, there are no rules here – we’re trying to accomplish something’"