This is why, every year in the fall, we organize an Annual Meeting, bringing patients and researchers together for a day of presentations and networking. Everyone’s knowledge and experience comes together in one place during this day. And this year, the meeting took place at the Princess Máxima Center, in Utrecht.

The first speaker of the day was Willemijn Plieger, who is a research coordinator at the Vereniging Kinderkanker Nederland, currently part of Prinses Máxima Center, a support organization of almost 6000 members for families who have or had a child patient. Willemijn’s work is focused on involving children more in research. When asked what could be done to facilitate involvement, her answer was to make time for and structuralize children’s involvement. She also spoke of how difficult it is for researchers to make the first step towards collaborating with patients. 

Willemijn’s drive is personal. Her work is driven by her story of her son who was diagnosed with cancer at the age of 4. She openly shared about the experiences that followed the diagnosis and how the experience of one individual can drive change in research and make an impact. In her words, going through the experience with her son made her realize that the science that was helping her boy came to exist because other children went through a similar experience. Like bricks in a wall, those experiences and the research done because of them, stacked study after study that eventually saved her son’s life. 

Roland Westerlaken, the second speaker of the day, had a different story. Aged 20, he was diagnosed with Von Hippel-Lindau disease, a rare hereditary tumor syndrome. He had inherited it from his father. He turned his illness and his experiences into a life mission. Patients with this syndrome need screenings a few times a year and multiple treatments during their life. His work and efforts, together with others, resulted in the first publication ever of a care pathway: an established plan that describes essential steps in the care of patients with this specific clinical problem. 

Their experiences might be different, but what Roland and Willemijn have in common is that they turned their personal struggle into a mission to help others. At Oncode Institute, we believe in the power and strength of such personal drives. As Colette ten Hove, Programme Manager of the Patient Engagement Programme put it, it’s about “Involving the unique experiential expertise of patients with the goal of increasing the relevance and quality of research, care and life for patients”. 

The afternoon was focused on networking and poster presentations. Young researchers from different Oncode Institute labs presented their work, in their best effort to make the research accessible to a non-scientific audience. After networking lunch, they received questions and feedback that helped both to further the audience’s understanding and to improve the researchers’ informing skills.

“As researchers, we mostly focus on science but you can learn so much from interacting with the patients,” says Elham Beyranvand Nejad, who is a postdoc in Oncode Investigator Karin de Visser’s lab at the NKI. “It was great to meet the patients through this program, and the feedback from the patients is precious for us” she adds. Elham joined the Patient Engagement Programme in January this year. “The significance of engaging with patients lies not only in obtaining valuable feedback but also in gaining insights into their perspectives on the research and understanding their emotions and thoughts”.

“I truly enjoyed the networking session, and the chance to meet and interact with others,” says Carolien Hovenier, who is a journalist, a Patient Partner in our Patient Engagement Programme and also a Patient Advocate for Olijf, a network organization for women with gynecological cancer. “There is value in bringing knowledge and personal experiences together,” she adds.

Get in touch

Are you a (former) cancer patient or Oncode Institute researcher and would you like to contribute to Oncode Institute’s mission to narrow the gap between the world of science and the reality of the patient? We would love to get in touch with you. See our website for further details.

Oncode Patient Engagement Programme

The premise of Oncode Institute's Patient Engagement Programme is to encourage direct contact between patients and researchers in order to bring these two worlds of experience closer together. This goes beyond simply informing (former) patients; we want to encourage both researchers and patients to discover, explore and understand each other's worlds.

For questions or more information, contact Colette ten Hove at [email protected]