We bring the combined experience and perspective of the patient as well as that of an academic researcher and the shared conviction that patient education is key to performing better clinical research. Over the past year we have worked to consolidate a database of interested parties in academia, the pharmaceutical industry and patient associations and organised a conference to introduce EUPATI to these stakeholders in our region in March 2015. With the Swiss Clinical Trial Organisation and the other members of the National Liaison team, we launched a collaborative Swiss EUPATI National Platform (ENP) in February 2016 in Bern.
We have been excited to review sections of the EUPATI educational materials and know they will be very useful for patient training at a national and regional level. The fact that patients better understand how good quality clinical trials are performed and that they can have a role in their design and conduct will hopefully serve to increase recruitment to clinical trials in Switzerland and Europe-wide. Additionally, these materials might serve as the basis for training courses aimed at specific patient groups and contribute to the advancement of citizen science in general.
Collaboration from both sides
Given the real need for more patient education, Geraldine sees the EUPATI toolbox as a great source of general information about the R&D process and how clinical trials are performed, but also as a guideline to how patients can be actively involved. She is glad that the concepts of ethics and research quality are central to EUPATI. Though not focused on any disease or therapeutic domain, she knows the educational materials can be adapted to meet specific needs in the future and, as they are available in 3 of the National languages of Switzerland, that they will be utilised for patient education at a regional level.
Karin reflects about when she was diagnosed with early stage breast cancer in April 2012. “I was already well-connected in the breast cancer community through a friend who had gone through BC several years earlier and she recommended an excellent oncologist for me. I got second opinions for the suggested procedures and did lots of online research on all aspects of the interventions and treatment.
Given all the support and resources I had available, I became an informed and empowered patient, healed quickly, and have been able to pursue a desire to help others. At the time, I knew of no centralized way of accessing this information – especially for the layperson, for someone facing cancer without the advantages that I had. I went on US websites like www.breastcancer.org for information which was very helpful to me, but it is not easy for everyone to digest, sift through, and pinpoint the needed data and separate it from the superfluous”.
Geraldine and Karin are both delighted to be a part of this program of understanding and sharing medical knowledge to empower patients to make more informed decisions about their health.
Dr. Geraldine Canny is an immunologist with significant experience in translational research, research affairs, training and patient education. With several published articles on endometriosis, she has served as the referent biologist for an endometriosis patient association since 2012. In this capacity she coordinates EUPATI activities in the French speaking part of Switzerland. She works at the Ecole Polytechnique Fédérale de Lausanne.