More than 60 patients and researchers participated in Oncode Institute’s fourth annual meeting of the Patient Perspective Program, held in Utrecht on January 22, 2025. Attendees shared stories, listened, and actively contributed to discussions to learn from each other.

Involvement in research

The morning talks revolved around the role of patient organizations in research design. Cristina Guerrero Paez, director of Breast Cancer Society Netherlands (Borstkankervereniging Nederland, BVN), made a strong case for patient advocacy and a patient-driven research agenda. BVN aims to embed patient participation in scientific research. Their patient advice group, currently consisting of more than 20 (ex) patients, actively supports researchers during trial design.

The SONIA study is one of the trials in which BVN is involved. This phase-3 randomized clinical trial evaluated the efficacy, safety, and cost-effectiveness of CDK4/6 inhibitors added to first- or second-line endocrine therapy patients with hormone receptor-positive, HER2-negative advanced breast cancer. Noor Wortelboer, coordinator of the SONIA study, presented the results and a comprehensive study timeline. Wortelboer stressed that BVN’s patient advocates played an essential role in the study design— from co-writing the funding proposal to disseminating results upon trial completion.

From bench to bedside — and clinical guidelines

All efforts of patient organizations aside, Oncode Investigators themselves take responsibility, too — not only conducting fundamental research but also taking this to the clinic. Jacco van Rheenen, Oncode Investigator and group leader at the Netherlands Cancer Institute (Nederlands Kanker Instituut, NKI), illustrated this. While his fundamental research focuses on how the menstrual cycle affects chemotherapy effectiveness, his research group has designed a prospective clinical trial, made possible by the Oncode Institute Clinical Proof of Concept funding program, which will start in 2025. During this trial, they plan to monitor breast cancer patients’ responses to chemotherapy, keeping their stage of menstrual cycle in mind. This study might lead to a subsequent clinical trial in which clinical practice is changed.

Warnyta Minnaard illustrated the strength of patient advocacy. She is co-founder of Missie Tumor Onbekend, a cooperation of interest organizations for patients suffering from Cancer of Unknown Primary (CUP).  CUP is among the ten most common forms of cancer in the Netherlands, and many patients face a long and uncertain diagnostic journey. Thanks to Missie Tumor Onbekend’s lobbying, whole-genome sequencing is now integrated into clinical practice earlier, speeding up diagnosis. As a result, health insurers now cover this test through basic health insurance, making targeted treatment more accessible.

Bridging Science and Patient Experience

Three young Oncode researchers, Danny Feijtel (Rodriguez Colman group), Rowie Borst (Meyaard group), and Carlo Vermeulen (De Ridder group), demonstrated the power of clear communication in science. They presented their research to fellow researchers and patients, ensuring accessibility by simplifying complex concepts. Danny explored how diet influences colorectal cancer, focusing on the effects of short-chain fatty acids. Rowie investigated how collagen affects immune regulation and response to immunotherapy. Carlo introduced a fast AI-based method for classifying brain tumors during surgery. Each of them had received valuable feedback from their assigned patient partner prior to the meeting, helping them refine their message and bridge the gap between fundamental research and patient experience.

Workshop on patient participation

The afternoon started with a workshop hosted by INVOLV, which focuses on advice and training for patient participation in healthcare, welfare, and research. After identifying four patient types, each with their own experiences, qualities, and skills, attendees were asked to determine at which moment a specific patient type was the most valuable during research. They then used the participation matrix to explore different forms of patient participation in research.

Later in the workshop, the group was divided into researchers and patients. Each group of participants was asked to discuss their needs, expectations, and experiences within the Patient Perspective Program. Combining the groups again, all attendees discussed how to shape and evaluate the Program. These sessions underlined the importance of cooperation and the focus on each patient’s unique qualities and input. The attendees’ consensus: clear expectations and regular evaluation are the key to success.

Building bridges – uniting perspectives through collaboration 

Participants of the meeting praised the power of the sustainable relationships between patient partners and researchers. They say this unique collaboration, based on long-term involvement, stimulates open and honest communication.

Theo Theunissen, one of the patients present at the meeting, is proud to be a part of the program. “Being sick or getting better isn’t free,” he says. “Every patient is entitled to their own grief, but still, there’s always something you can do. Many researchers lack patient perspective, and most patients don’t know how research works. Both can benefit from bringing the two groups together.” Theo himself contributes to the field of research integrity and data confidentiality for patients like himself. “Thanks to this program, I’ve learned to cooperate with researchers and join forces with them to create something worthwhile.”

Oncode Investigator Leila Akkari agrees with Theo. “At the end of the line, these are the lives of patients we are talking about. Talking with patients brings back the human dimension to our work we tend to forget.” Thanks to patients, Leila says, her research has become more encompassing. “As a cancer patient, treatment becomes part of your life. Patients let us think about what can be done in the future. Not tomorrow, but in ten years. We as researchers need to make our knowledge accessible to the general public.”

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.