Experiences from a dedicated workshop to engage patients in oncology research
Patient-researchers onboarding, prepare for take-off, destination “Transdisciplinarity”. The Symphony of Us is a transdisciplinary research project initiated by the King Baudouin Foundation aimed at better understanding and implementing the concept of “Patient Value” in oncology research. In this blogpost, we introduce the first step we took towards building a truly transdisciplinary research process, namely involving patient-researchers.
Author
The Symphony of Us team
Introduction
The “Symphony of Us” (SoU) is a transdisciplinary research project initiated by the King Baudouin Foundation aimed at better understanding and implementing the concept of “Patient Value” in oncology research.
In a series of blogposts, we will share the project’s goals, our ongoing and planned studies, and findings. We begin by introducing our first major step in building a transdisciplinary (TD) research process: starting a collaboration with patient-researchers.
But first, what is TD? Many definitions exist, but for the purposes of the SoU, we consider TD as the co-creation of a research project with different academic disciplines and multiple non-academic stakeholders, by means of both reflection-oriented and action-oriented research with the purpose of knowledge collection and generation, in constant participation with patients and other stakeholders. By non-academic actors we understand in particular individuals with lay knowledge in a certain area, i.e., experts by experience. In the oncology research field, these would be the patients, the caregivers. Additionally, non-academic actors are also the professionals involved in a certain field, such as healthcare providers, the pharmaceutical industry, regulators, and policymakers. In a TD process, the engagement of such non-academic stakeholders is more significant than the researchers merely collecting data from other stakeholders through e.g. surveys or informing the stakeholders about the results through publications or conferences. Rather, the aim of TD is to co-produce knowledge together in ways that enable the non-academic actors to shape the research and to have their knowledge valued.
SoU consists of four academic researchers with different backgrounds (law, nursing sciences, biomedical sciences, and health management). This already gives us an interdisciplinary basis, but to be TD, we need to actively seek and ensure the collaboration with other stakeholders in the oncology research field, such as patients, physicians, nurses, pharmaceutical companies, academic institutes, policy, and lawmakers, and more. TD goes even beyond, by also seeking collaborations with artists and philosophers.
While the role, experience and input of all stakeholders are equally important, we believe that the patients’ voice should be at the heart of a project about patient value. As our manifesto calls: “together, we can create a powerful symphony, orchestrated by patients”. To lay the foundations for this, we opted to make the very first step of our TD exploration together with patients. Namely, to partner with patients in every aspect of the research project (including design, data collection, data analysis…). Such partnership implies involving patients in the research team, either as researchers and co-authors, or as contributors to key decisions regarding the research processes and findings. Inspired by work done in France with the association “Seintinelles”, the SoU sought to involve patient-researchers in the project.
Patient-researchers in the Symphony of Us: how it started
In February 2024, the SoU team opened a call for patient-researchers, which was disseminated to patient organizations and on social media. What we looked for were people who are experts only by virtue of their experience as patients. No formal previous training in research methodologies was needed, but curiosity about research and willingness to contribute to several steps in the project were a must.
The SoU is not just a TD project – it is also a multilingual one, as it is based in Belgium and starts its exploration of the concept “Patient Value” from the Belgian oncology research ecosystem. All our studies need to be accessible in French, Dutch, and English, and the team’s working language is English. Therefore, we also sought to welcome patients who could navigate fluently across the different languages.
During an information session with interested patients, we shared more about the project, our TD approach, and our expectations. We also introduced our plan to conduct a two-day workshop with the future patient-researchers in person.
Workshop with patient-researchers: creating a safe and open space to collaborate
The workshop took place on 22 and 23 April at the Irish College in Leuven, and it was a crucial part of building the blended team of researchers and patients. Among its goals were to get to know each other, to introduce the basics of research to the patients, to provide an opportunity for the patients to experience their power as patient-researchers, and to start exploring the meaning of patient value together. As such, the workshop uniquely served two purposes: an organizational one and a research one. On the one hand, it was a beautiful way to start an exciting collaboration, and it offered a chance for the patients to assess for themselves whether becoming a part of such a project fit with their interests, expectations, and availability. On the other hand, it provided important findings on how TD research processes can be organized and what patient value in oncology research could mean for different people.
During the preparation and conduct of the workshop, the SoU team worked closely with an experienced facilitator (Robin Ibens). This way, we put further emphasis on taking care of each other during the event not simply at research and professional levels, but also as humans, recognizing each other’s sensitivities, needs and unique lived experiences. During one of the most crucial discussions, the participants were joined by the president of the SoU Steering committee – Marie-Evelyne Feyerick, a patient herself, who shared her valuable experience in navigating life, care, and research.
Through a series of carefully selected exercises, we navigated questions such as why it is important to integrate the patient perspective in research, and what the possible challenges of being a patient in a research project are. Recognizing and discussing values – individual and collective – was central to the two days and allowed us to build a shared language as well as to start dreaming about a shared vision for change in the oncology research and care system.
The discussions during both days were captured through various means (recordings and notes). This allowed us to fulfill the research aim of the workshop: i.e., to gather and analyze data on how the TD research process can be organized and to start exploring the concept of patient value in specific contexts. The results of this sub-goal will be communicated in an upcoming article in detail.
A spirit of openness, enthusiasm and trust was built and maintained throughout the two days and beyond, for which we are extremely grateful to all patients who took part. A big thank you to the King Baudouin Foundation’s team that supports this project and helped with all logistical details, and to the members of our Steering committee for all advice and support throughout this journey.
What comes now?
We will provide the patient-researchers with an in-depth training into qualitative research methods. Afterwards, we will start working together on different studies that are part of the SoU project. Stay tuned for the next updates of our story.