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Exploring possibilities for patient involvement in translational molecular medicine

Project title:

Exploring possibilities for patient involvement in translational molecular medicine

Project leaders: dr. Marianne Boenink (University of Twente) and dr. Simone van der Burg (IQ healthcare, Radboud University Medical Centre)

Fundiers: Centre for Society and Genomics and Centre for Translational Molecular Medicine

Duration: January 1, 2012 – December 31, 2013

Translational research aims to contribute to the effective movement (‘translation’) of insights gained in biomedical research to relevant and useful clinical applications. In ethics and governance of innovation, awareness has grown that early reflection on and discussion about the potential implications of emerging technologies can contribute to innovations that are ethically acceptable, socially robust and widely used. A well-established way to generate such early reflection is to engage future users and stakeholders early on in the development of new technologies. In the field of translational medicine, however, such early engagement of future users is as yet not systematically attended to. This project addressed this gap, focusing on a specific group of users: patients. It investigated when and under which conditions patient involvement in scientific research teams can be conducive to bridging the gap between bench and bedside and ultimately contribute to responsible innovation in the biomedical domain. The project ultimately developed two tools to facilitate early patient involvement in biomedical R&D:

1.A decision aid, to select issues and methods for involving patients at different moments during the translational research trajectory;

2.A discussion method, to foster patients’ imagination of an innovation and invite their associations on how it will affect their quality of life or society at large. The results of the discussions are fed back to researchers.

Researchers: dr. Marianne Boenink, dr. Lieke van der Scheer