Patient advocates of Inspire2Live participated in the Open Assembly of Sage Bionetworks in China

Patient advocates of Inspire2Live participated in the Open Assembly of Sage Bionetworks in China

Posted on Tuesday, March 29th, 2016 at 10:11 PM by

March 26 till 28, 2016, 4 patient advocates of Inspire2Live participated in the Open Assembly of Sage Bionetworks in China, Shenzhen. The theme of the congres was ‘Open innovation and the environment’.

It was a very active working congres. On Friday there were talks and dialogues during the panel discussions. On Saturday we engaged with the city of Shenzhen in groups around 3 topics:

  1. Innovation in open science,
  2. Public art
  3. Cutting edge science

On Sunday there was a very good and inspirational discussion in a panel with two of our patient advocates: Ilona Schelle en Piarella Peralta. The topic of the discussion was: participation of patients in the world of open science and innovation. It was good because Ilona and Piarella focused on the question: ‘What can patients do to participate in research?’ In their opinion this is not the right question. Its about ‘Why are we doing all this work?’ and if you know why, what should be done to take care of a better quality of live for the patient and her loved one.

Only after that the question can be answered: “And what can I as a patient, do to even improve your work as a scientist?’ It’s the collaboration of patients, researchers and clinicians that will make the difference. In a beautiful way Ilona and Piarella turned the congres into a real ‘all together in this’ congres.

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