Collaboration in person

The ultimate goal of Oncode Institute is to outsmart cancer and impact patient’s lives. Therefore, we feel it is important that patients become part of Oncode’s DNA and connect with Oncode researchers. Erica van Wuijtswinkel, patient representative at Oncode’s Supervisory Board, explains the importance of patient engagement.

Erica van Wuijtswinkel

Patient representative at Oncode’s Supervisory Board

Interview Erica van Wuijtswinkel, patient representative at Oncode’s Supervisory Board

Where does your passion for patient engagement stem from?

I was diagnosed with cervical cancer in February 2016. Doctors gave me only a year to fifteen months to live, but luckily I am still here. I often respond to treatments in an atypical manner: low-dose chemotherapy has helped considerably to target my cancer, while immunotherapy generated no effects. This made me aware of the blind spots in cancer research. Furthermore, I strongly believe that cancer patients’ experiences are useful to researchers. Combining my background in writing funding applications with this interest, I started to assess academic funding applications for KWF, the Dutch Cancer Society. From there, Oncode asked me to join their Supervisory Board last year.

Beating cancer is a highly multidisciplinary endeavour, which makes networking among scientists, clinicians, patients and policy makers essential to success.

What has happened since then?

By inviting me in, Oncode’s Supervisory Board has highlighted the importance of patient engagement. But for patient engagement to take off, scientists need to actually talk with patients! Together with Oncode Programme Manager Sarah van den Boogaard, we’re currently setting up a programme that helps scientists keen to engage with patients to overcome the practicalities. And we reflect on how scientists can best ensure that the focus on patient engagement doesn’t get lost amidst many other priorities.

Indeed, most academics have highly busy schedules. Why should they consider patient engagement nevertheless?

To get inspired. A patient’s fresh perspective can help academics to refine their work or focus on those topics that are most relevant to patients. But that’s not all. Many academics tell me that their involvement with patients has made them more motivated by highlighting the social relevance of their research.