Stakeholder Forum on Patient Value in oncology research: ‘Alone you go faster, together we go further’
Exploring the meaning of patient value – and how all of us can work together for it. That was the main objective of the first Stakeholder Forum of the Symphony of Us (SoU) project, which took place October 24th 2024 in La Tricoterie, Brussels. And a symphony of ideas and insights it was!
Author
The Symphony of Us team
The Symphony of Us (SoU) is a transdisciplinary research project aimed at exploring the meaning of ‘patient value’ in oncology research - and how all stakeholders in the research community can work together for it. After all, we know that oncology research does not always benefit patients as much as it could, despite the amount of money and other resources that are put into it. SoU consists of four academic researchers from different backgrounds (nursing sciences, biomedical sciences, law and social sciences). The research team is therefore already interdisciplinary. However, to be transdisciplinary, the project even goes a step further.
In the summer of 2024, the SoU team opened up a call for all stakeholders in oncology research to participate in a Forum bringing the community together. Before, the team had already been extensively involved with patients – for example by establishing a collaboration with patient-researchers as well as by exploring the concept of patient value from the perspectives of patients themselves. Yet, the time had come to open up the debate on patient value to all stakeholders within oncology research, and to explore how to work together for it. The project now really becomes transdisciplinary!
As far as stakeholders in oncology are concerned, there are of course many! Over 40 stakeholders participated in the Forum, out of which some identified themselves as patients or patient representatives, others as professionals or researchers and still others as representatives from (pharma) industry, biobanks, public policy institutions or NGO’s. Even artists participated in the Forum! Without pretending to be representative for the whole oncology research community, the Forum brought various profiles within the community together. If only for a day, La Tricoterie hosted ‘a little oncology research community’.
All stakeholders that participated, with their various profiles, roles, experiences and ideas, are necessary to create a symphony. And that’s exactly what they did! The artists set the tone. With their play, ‘Care à prendre’, the artist group Arsenic2 illustrated that patient value can have different meanings from the point of view of one’s position in the oncology research community. Patients and their caregivers, or academic and industry researchers, for example, may have different ideas on what creates patient value. Furthermore, of course everyone has their own values and needs. Patients, for example, have very individual needs and might prioritize different values. With these insights in mind, the group discussions at the various tables took off.
Experiences and insights were shared, and ideas were vigorously defended. After a little icebreaker in which participants had to choose and explain an important value in life, the discussion went on to patient value in oncology research. First and foremost, participants had to think about what exactly adds value to patients in research. However, this discussion was not entirely theoretical in nature. Concrete actions that could further bring patient value to life (and how stakeholders can work for this) were immediately brought up. And this will of course require collaboration between stakeholders, which was then subsequently discussed. As the president of the Fund Steering Committee of this project rightfully concluded in the closing session: ‘Alone you go faster, together we go further!’ The forum gave us as a community much inspiration to think about and work together for in the future.
The October Stakeholder Forum was a first exploratory event on patient value in the course of the Symphony of Us project. Please keep an eye on our website and social media to be updated about research activities, other initiatives and future stakeholder events. We will keep you informed!
The SoU team would like to thank all stakeholders for participating and giving us valuable insights and trust. Special thanks go to patient-researcher Lizzy Bax for co-hosting the Forum, all facilitators who, together with the team, animated group discussions, and the president of the Fund Steering Committee for providing the take-home messages.
Credits for the pictures go to Arthur Haerinck.
The Symphony of Us is a collaboration between AP Hogeschool Antwerpen, UGent and ULB, initiated and supported by the King Baudouin Foundation.