On 27 January, patient partners, patient organisations and Oncode researchers gathered in Utrecht for the Annual Meeting of the Patient Perspective Programme. The day offered a space for open exchange, reflection and shared learning about how patient involvement can meaningfully strengthen fundamental cancer research.

Bringing lived experience into research

Lidia Barberio (Longkanker Nederland) opened with a statement that became a running theme: “More than drinking cups of tea.” Her message was clear. Patient organisations translate lived experience into action. Through moderated online communities of almost 3,000 members, surveys and digital panels, they surface what truly matters to patients, such as mental impact, treatment burden and clarity of language.

Patient advocate Merel Hennink (Longkanker Nederland) added a personal layer by sharing her journey since being diagnosed ten years ago. She spoke about the importance of asking “why” throughout her treatment path and how understanding the reasoning behind decisions can transform the experience of care. Her story reminded participants how daily realities, uncertainties and emotions sit alongside scientific progress.
 

Connecting scientific work with patient perspectives

Oncode researchers presented ongoing work, including contributions from Sarah Pruckl (NKI / Oncode Institute) on chemotherapy sensitivity and the menstrual cycle, showing how fundamental questions can lead to more personalised insights. These talks sparked curiosity in the room and demonstrated the value of bringing scientific and lived perspectives together.

Cheriel Hofstad presented the STAP programme (Key to Active Participation Policy), an initiative of Sint Maartenskliniek and Radboudumc, emphasising the role of accessible language and mutual understanding in shaping more inclusive research environments.

Later, Agustin Enciso-Martinez and Sako Zeverijn (Ten Dijke Group / Oncode Institute / LUMC) unpacked one of the most complex realities in patient involvement: expectations. “Showing timelines helps,” Agustin explained because engagement only works when everyone is honest about what science can deliver, and when. 

Sako, speaking as an Oncode patient partner, shared how advances in fundamental research directly shaped his own treatment options, underlining the need for long-term commitment to early-stage scientific inquiry. His reflection made clear how closely patient experience and fundamental research are connected.

“Fundamental research will save lives.”

Sako Zeverijn, Oncode patient partner.

Reflecting together

Participants also joined an interactive a dialogue theatre session led by Frank Kupper (VU Amsterdam / Mens in de Maak). Through simple, human scenes, the session encouraged attendees to reflect on expectations, communication and the dynamics between patients and researchers from another angle. This moment allowed the group to connect scientific work with the personal experiences that motivate it.

Moving forward together

The day showed that involving patients in fundamental research is more than a method. It is a relationship built over time that deepens understanding, strengthens collaboration and brings the Oncode community closer to its shared goal of outsmarting cancer.

Oncode Institute's Patient Perspective Program

Curious about how patients and researchers work together at Oncode Institute? 
Contact Colette ten Hove to learn more about the Patient Perspective Program.