Partnering with patients in translational oncology research: ethical approach

Abstract

BackgroundThe 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.MethodsTwo 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.ResultsThe 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.ConclusionsEmpirical 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.

Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice

“…• Research process could expose patient partners to incidental findings on other patients' health [25,31].…”

“…Principles of research ethics are included in national and institutional guidelines and are implemented by institutional research ethics boards (REBs) and researchers. In our scoping review, we have identified only 5 issues (n = 5) associated with [25,30], or may expose patient partners to incidental findings about patient participants [25,31].…”

The growing role of precision and personalized medicine for cancer treatment

“…Some have suggested the development of “translational ethics” that involves the patients as much as possible in the research and clinical processes. One successful study, CARPEM, formed a patient committee group tasked with designing a pamphlet explaining the informed consent process in a patient-friendly manner 170 . Others have suggested updating the “social contract” between clinicians, researchers, patients, and society as a whole 171 .…”

Academic health centers: integration of clinical research with healthcare and education. Comments on a workshop

“…The University of Coimbra brought experiences accumulated since its foundation in 1290, whereas the University of São Paulo was founded in 1935. The working group and others 5 , 6 reported a growing trend of academic partnerships between U.S., Canadian, and European health science institutions and AHCs from low- and middle-income countries. Research has been identified as one of the main reasons of this global movement and will gain increasing importance.…”