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01.12.2017 | Research | Ausgabe 1/2017 Open Access

Journal of Translational Medicine 1/2017

Partnering with patients in translational oncology research: ethical approach

Zeitschrift:
Journal of Translational Medicine > Ausgabe 1/2017
Autoren:
Marie-France Mamzer, Nathalie Duchange, Sylviane Darquy, Patrice Marvanne, Claude Rambaud, Giovanna Marsico, Catherine Cerisey, Florian Scotté, Anita Burgun, Cécile Badoual, Pierre Laurent-Puig, Christian Hervé
Wichtige Hinweise
The original publication of this article has been updated with a corrected author name, the update can be reviewed under doi:10.​1186/​s12967-017-1181-0.
An erratum to this article is available at http://​dx.​doi.​org/​10.​1186/​s12967-017-1181-0.

Abstract

Background

The research program CARPEM (cancer research and personalized medicine) brings together the expertise of researchers and hospital-based oncologists to develop translational research in the context of personalized or “precision” medicine for cancer. There is recognition that patient involvement can help to take into account their needs and priorities in the development of this emerging practice but there is currently no consensus about how this can be achieved. In this study, we developed an empirical ethical research action aiming to improve patient representatives’ involvement in the development of the translational research program together with health professionals. The aim is to promote common understanding and sharing of knowledge between all parties and to establish a long-term partnership integrating patient’s expectations.

Methods

Two distinct committees were settled in CARPEM: an “Expert Committee”, gathering healthcare and research professionals, and a “Patient Committee”, gathering patients and patient representatives. A multidisciplinary team trained in medical ethics research ensured communication between the two committees as well as analysis of discussions, minutes and outputs from all stakeholders.

Results

The results highlight the efficiency of the transfer of knowledge between interested parties. Patient representatives and professionals were able to identify new ethical challenges and co-elaborate new procedures to gather information and consent forms for adapting to practices and recommendations developed during the process. Moreover, included patient representatives became full partners and participated in the transfer of knowledge to the public via conferences and publications.

Conclusions

Empirical ethical research based on a patient-centered approach could help in establishing a fair model for coordination and support actions during cancer research, striking a balance between the regulatory framework, researcher needs and patient expectations. Our approach addresses the concept of translational ethics as a way to handle the main remaining gap between combining care and research activities in the medical pathway and the existing framework.
Literatur
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