Patient and Citizen Panels in three countries
A key element of this project is the involvement of members of society into the research on innovative treatments of arthritis. We will set up a two-way dialogue at eye level between patients / citizens and leading European scientists in three European countries (Germany, Switzerland, Ireland). In the so-called patient and citizen panels (about 3 to 4 days) participants are first introduced to the field of innovative research on arthritis through expert presentations and a hearing with experts selected by the participants. In a second step, participants negotiate about this input and then compile patient-/ citizen-reports supported by independent facilitators. Therefore, the main objective of this work package is to discuss the chances, risks and ethical aspects of innovative arthritis treatments with lay people and to develop communication strategies to provide clinics, interested companies as well as the media and a broader public with balanced, professionally developed and scientifically sound information.
- What do lay people (patients / citizens) want to know about GAMBA? What are their associations with GAMBA? What specific topics are they interested in from their special point of view as concerned patients / interested citizens?
- What are lay people’s recommendations to the scientific world, to regulators, industry and media regarding the chances, risks, ethical/social aspects of GAMBA?
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The German PATIENT PANEL (held in may 2011) had 16 participants, the German CITIZEN PANEL (held in January / February 2012) 17 members who had been chosen by random selection around the site of the Klinikum Rechts der Isar in Munich. The German lay report and supporting documents could be found at www.sciencedialogue.de. |
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The Suiss LAY- AND PATIENT PANEL (held in June 2012) had been a common event of lay- and randomly invited people and had 11 participants. |
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The Irish PATIENT PANEL (held in may 2012) had 19 participants; The CITIZEN PANEL (held in June 2012) had 10 members who had been chosen by random selection around the city of galway. |