Patients can be valuable partners in research

13 December 2019
To progress successfully in biomedical research, patients and researchers often need to collaborate actively. To guarantee a constructive relationship between all parties requires mutual respect and a delicate balance between the expectations of all involved parties. 

Patients expect both information and scientific 
results from the scientists who study their disease/ condition. Their first strong desire is to know the cause of their disease. Is there a specific DNA or metabolic defect responsible for their conditions? Can a clear diagnosis be made based on the results of research? A second important expectation is: can research into the biological mechanisms (the pathogenesis) of the disease be translated into progress towards a cure or an improved management of the illness?

The researchers who dedicate themselves to answering these questions, however, have their own  expectations. To unravel disease mechanisms, they often need access to biological samples; they have to obtain blood or tissue samples with the consent of the patient or his legal representative. Also, in order to progress from results obtained on cell cultures and animal models to a treatment on humans, they will have to organize clinical trials for which they will need patients.

It is clear that both scientists and patients bring their own invaluable experience to the quest of understanding and treating disease. The contribution of both parties should be recognized and built into a partnership which can lead to a modification of the way in which the research will be performed.

That is why ‘Kom op tegen Kanker’, for the evaluation of research projects with practical clinical applications,
has set up a separate committee composed of patients and family members. The advice they give is rooted in
their experience in having been treated for cancer and highlights practical consequences of the treatments
to be developed or tested of which the scientists may not always be fully aware. Together with the scientific
committee, an overall advice is formulated in which the patient committee contributes about 30% of the
final score of the projects.

This two-committee approach has already proven its value and receives full support from the members of the scientific committee. FWO has decided to use the same approach for the projects pertaining to clinical aspects of treatment in cancer.

Research on diseases, including cancer, requires in many cases a constructive contribution of both scientists and patients. A close partnership between these two parties is essential and creates substantial added value for the quality of the research. Balancing expectations and acknowledging the value of each other’s
experience and contribution is essential to develop good science aimed at keeping or making people healthy.
Jean-Jacques Cassiman, Chair of the Board of Kom Op Tegen Kanker, Chair of the Fund Rare Disease and Orphan drugs of the King Baudouin Foundation, emeritus professor Center for Human Genetics of KU Leuven.

Related VIB ​Times articles on the item 'Great Science has many supporters'


Jean-Jacques Cassiman, Chair of the Board of Kom Op Tegen Kanker, Chair of the Fund Rare Disease and Orphan drugs of the King Baudouin Foundation, emeritus professor Center for Human Genetics of KU Leuven.​​


On the cover: the VIB-KU Leuven Center for
Cancer Biology team cycling for 1000 km Kom
op Tegen Kanker.
Back row from left to right: Jermaine Goveia,
Joris Souffreau and Sander Willox.
Front row from left to right: Dries Verdegem,
Laure-Anne Teuwen Ann Bouché, Roel Kroes
and Lawrence van Helleputte.​