More than ten years ago, I was confronted with lymphoma. Eight months later I was declared clean, but cancer has never disappeared from my life. In different roles I represent the interest of the patient of today and tomorrow, including at Oncode, where I am part of the Clinical Advisory Board. As a patient representative, I review clinical research applications from the patient's point of view: what is asked of the patient and what will it bring him or her? A valuable role, even in an institute that focuses on fundamental research.
Patient representative Clinical Advisory Board of Oncode Institute
Don't talk about patients, but with patients
Back in 2010, my lymphoma diagnosis came with a poor prognosis. The value of research then became clear to me: I could participate in a clinical trial. It felt like a last resort, but it resulted in recovery. Eight months after I was declared clean, I participated in Alpe d'HuZes. I had never touched a racing bike before. Now, 10 years later, I still cycle to raise money for cancer research every year and, in my own way, I do what I can for people with cancer.
"We want to make the researcher think about whether what he or she is asking for is proportional to what it will bring the patient"
Among other things, I am part of the Clinical Advisory Board of Oncode. Together with Muriëlle Sark and Joop Kroes, we represent the interests of patients in the review of clinical research project applications. Oncode facilitates the first step of clinical research that looks at whether discoveries from fundamental research have an impact on patients. And we are involved the moment an Oncode researcher submits an application for funding for (pre-)clinical research.
Why are we involved? It is because through our presence in the Clinical Advisory Board, we ensure that researchers are also thinking from a patient's perspective and we make sure what they ask from a patient is proportionate to what they have to offer that patient. We ensure that the patient's interests are taken into account and that there is clear communication with the patient and patient associations throughout the entire process. A patient must know exactly what he or she is signing up for before participating. Of course, you hope that participation offers something to the patients involved, like an increased chance of survival or improvement in quality of life, to them or at least to future patients.
It might sound obvious, because you would think everyone understands the impact of a cancer diagnosis. Yet you can't expect researchers to look at their research with the same perspective as a (former) patient does. So you have to actively encourage them Oncode recognizes this need, and because of this recognition, people like Muriëlle, Joop and myself help assess applications. I like the fact that in this setting I can bring new ideas and insights and provide inspiration to the researchers. This is how we, as the Clinical Advisory Board, can give qualitative feedback.
An active role for patient representatives in the review of (pre-)clinical research is just one of the ways Oncode talks with the patient, rather than about the patient. This inclusive approach is embedded in more places in the organization and, as far as I know, this is unique. In the past decade of working in the oncology field, I have not come across another initiative like Oncode. The patient is seen here as a partner with whom you collaborate. And collaboration is everywhere within Oncode: among the more than 900 Oncode researchers, with physicians and with business. Everything is aimed at accelerating the translation of insights from the laboratory to applications in the clinic, driven by the valorization team.
It is wonderful that patients are not just a target group, but a full partner. My decision to participate in a clinical trial ten years ago has led to me now helping to gear future trials even better to patients' wishes and needs. And I am still enjoying cycling every day.
Curious about other ways Oncode engages patients? Read more
Disclaimer: Lianne does her work for Oncode Institute in a personal capacity
Photography by Marloes Verweij, Laloes Fotografie