4 November 2019

Get the patient into the lab!

Oncode kicked off the ‘Patient Perspective Programme’ at the Netherlands Cancer Institute.

Elize Brolsma

Oncode’s mission is to outsmart cancer and impact patient’s lives. Since fundamental scientists usually don’t have much contact with patients, Oncode wants to stimulate and enable this connection. In order to do this, Oncode started the Patient Perspective Program. The goal of this program is to connect (ex-)patients to Oncode labs and/or individual Oncode researchers. This should decrease the distance between Oncode researchers and patients so they can explore, investigate and understand each other's worlds.

Research groups from the Netherlands Cancer Institute (Oncode Investigators Jacco van Rheenen, Leila Akkari, Karin de Visser and Wilbert Zwart) and the LUMC (Oncode Investigator Peter ten Dijke) are taking part in the first pilot of the Patient Perspective Program.

The program kicked off on October 10 at the Netherlands Cancer Institute, during an introductory evening. It turned out many patients and former patients are eager to contribute their time as ‘patient participants’. 27 enthusiastic and inquisitive patients and ex-patients, out of a total of 108 interested individuals from the digital Netherlands Cancer Institute patient panel, came to the meeting.

Why invite a patient to your lab?

Group leader Jacco van Rheenen, who works on ‘tailor-made’ chemotherapy for breast cancer patients, has had a ‘patient participant’ in his lab for some time now. She talks to the researchers and observes what they do. The patient also joined in a group retreat, where she gave a presentation about what it’s like to have a biopsy taken. “She learns about the research that we do and we learn a lot from her experiences as a patient,” summarises Jacco.

Why is this so important? Jacco explains: “We work here with a huge multidisciplinary team of people, all with their own expertise, ranging from doctors to statisticians and geneticists. The only person missing was the one who’s at the heart of it all: the patient.”

“A patient participant provides motivation and inspiration, unexpected questions and insights, and really helps us to communicate more effectively about our research.” In an earlier interview, he even referred to a remark by a surviving relative about the serious side effects of chemotherapy, and how that inspired him to start a new line of research, with far more emphasis on preventing the harmful effects of chemotherapy in individual patients.

The researchers at the introductory meeting for the Patient Perspective Programme. Luuk van Hooren, Laura Bornes, Wilbert Zwart and Antoinette van Weverwijk spoke about their research

How does it work?

A patient (or former patient) is coupled with an Oncode researcher within the NKI, shadowing the researcher in the lab for six to ten half-day sessions a year. The attendees were very positive about the goals of the program. “Even if my contribution is only minor, I’m very happy to take part,” said one of those present. Another said: “I have many years of experience in interpreting topics for others that are commonplace for me, but not necessarily for them.” When they were contacted by telephone two weeks later, almost all of the meeting attendees confirmed that they would be pleased to participate in the programme.

More information about the Patient Perspective Program
Please contact Sarah van den Boogaard if you’d like more information via: sarah.vandenboogaard@oncode.nl

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Elize is part of Oncode’s communication team. She has over 10 years of experience in the com-munication industry, both for commercial and non-profit organisations. After obtaining her bache-lor and master degree in communication at Utrecht University, Elize worked as a communication professional at a research institute, PR agency, law firm and internet company. She has a strong focus on external communications and Public Relations. At Oncode - together with her colleagues - Elize produces the monthly newsletters for Oncode Investigators & Researchers and the Oncode digital magazine. She publishes content for the Oncode website and is responsible for all social media channels. She enjoys discussing science with researchers and support them in their outreach.