Press release (03/09/2019)
Improving cancer research with the help of patients: An innovative approach by the Jules Bordet Institute
Brussels, September,3, 2019 – The Jules Bordet Institute, Belgium's reference centre in the fight against cancer, is innovating by creating the first patients group intended to help researchers perfect their avenues of research by sharing their perspectives on research projects. This patients group is known as "PISARO", standing for Patients de l'Institut qui Soutiennent et Améliorent la Recherche en Oncologie [Institute Patients Assisting and Supporting Cancer Research].
Involving the patients: a practice in tune with the times
Today, it is difficult to imagine patient care without taking into account the opinions of the patients, their carers and their loved ones. Indeed, patients and those close to them possess a unique form of knowledge: experience of care and of living with illness. When coupled with the knowledge of the professionals this can help in implementing actions that more precisely meet patient needs, consequently also alleviating doubts about participating in clinical trials. This is why the Institute decided to introduce the "patient-partner" programme in 2017. A project made possible thanks to the support of the "Friends of the Bordet Institute".
A rich and innovative cooperation between patients and researchers
Consulting patients for their opinions is a much less customary practice in the field of research. The complexity of the research subjects and the scientific and medical expertise needed to understand them could easily act as a disincentive. It is nevertheless this challenge that the Jules Bordet Institute, its teams and its patient-partner organisations decided to take up. Today, in a world of global research, all the players are mobilised in defining research priorities and meeting the expectations of those primarily concerned: the patients.
PISARO in practice
Every three months a group of patients meet to give their opinions on the academic research projects developed by researchers at the Jules Bordet Institute. Headed by Patrick Miqueu, coordinator of Research and Patient Partnership Promotion, at these PISARO group meetings a researcher presents his research project and then listens to the patients' questions and opinions. This feedback enables the researcher to further refine his project and to improve, for example, the description to be given to future patient participants. As Patrick Miqueu explains: "The experience patients possess of the illness and the constraints associated with the care can influence the way in which the research question is posed and, in turn, the way in which other patients are encouraged to participate in it."
A rewarding and enriching approach for patients and professionals
More and more patients are getting involved in the continuous improvement of hospital services at the Jules Bordet Institute. Eddy Deneckere, a group member, stresses how participating in the PISARO group was very instructive for him: "It gives you a better idea of the nature of day-to-day research at the Jules Border Institute and of how motivated all the hospital personnel are as they really take this to heart. It makes you realise the importance awarded to patient contributions."
- Press contacts (Institut Jules Bordet)
- Alexandra Cazan
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- Alexandra Cazan