Getting the patient’s voice into cancer research

Erica van Wuijtswinkel and Jacco van Rheenen on the importance of patient engagement

Marloes van Amerom

It’s one of those words that gets thrown around more and more: patient engagement. But what does it actually stand for and why should you, as a scientist, busy yourself with the patient’s perspective? To find out more, Oncode talks with Erica van Wuijtswinkel, patient representative on Oncode’s Supervisory Board and Jacco van Rheenen, group leader Intravital Cancer Imaging at the Netherlands Cancer Institute - and a firm advocate of more patient engagement.

Patient engagement is the latest buzzword in cancer research. But what does it actually entail?

Patient engagement essentially means that a researcher actively seeks to involve the perspective of cancer patients into his or her research.

Erica:
"There are many ways to do so. For instance, as a researcher you could hold in-depth interviews with patients that suffer from the type of cancer you are studying or that belong to the patient group that might use the medicine you are developing one day. But it could also consist of a visit to the annual meeting of a relevant patient organization within your field.”

Jacco:
“We are still at the set-up stage when it comes to patient engagement. But, yes, our aim is to talk to patients that belong to a patient group that stands to benefit from our research. Sadly, cancer is so widespread that most people in my team will probably know someone who has, or has had, cancer. Meeting people whose cancer took the very routes that you are studying is more rare and can therefore provide valuable new input.”

You both advocate more patient engagement within cancer research. What was your aha-moment in this respect?

Jacco:
“About five years ago, I gave a lecture on our research to a laymen audience. Afterwards, someone whose relative had died of cancer approached me. She told me she had felt angry and upset upon hearing that we were trying to develop new ideas that might, among others, lead to novel types of chemotherapy. “You know what actually killed my relative who had cancer? The side effects of that poison,” she said.

It dawned upon me that while continuing to develop new types of chemotherapy is important, so is decreasing the potentially harmful effects of this treatment and knowing more about how these can affect patients individually.

“I was initially not too happy with her remark, but it soon led to a light bulb moment. It dawned upon me that while continuing to develop new types of chemotherapy is important, so is decreasing the potentially harmful effects of this treatment and knowing more about how these can affect patients individually. As a result, carrying out fundamental research to trace the ways in which individual patients respond to chemo has become an important new area of inquiry for us.”

“More generally, that encounter made me realize how important it is to learn about the experiences of cancer patients. Only if we are well aware of their needs and desires, our research can be as tailored and relevant as possible. After all, it is there to benefit them.”

Erica:
“For me, discovering the role that patient engagement can play in cancer research wasn’t so much an aha-moment, as the outcome of a gradual process. I was diagnosed with cervical cancer in February 2016. Doctors gave me only a year to fifteen months to live, but fortunately I’ve so far proven the statistics wrong. During the course of my treatment, my doctor and I discovered that I often respond to treatments in an a-typical way. For instance, low-dose chemotherapy has helped considerably to target my cancer, but immunotherapy generated no effects. That experience made me realize that there are still many blind spots in cancer research, in spite of all the progress that has been made. And that gaining access to individual cancer patients’ experiences can be very helpful to researchers. Particularly now that personalized cancer treatments are increasingly seen as the way forward to beat cancer.”

There are still many blind spots in cancer research, in spite of all the progress that has been made.

Jacco’s earlier example showed how having more of an insight into the experiences of patients may help scientists detect future avenues of research. What are other benefits of patient engagement?

Erica:
“In one word: Inspiration. Engaging with patients introduces a different perspective on your research that can help sharpen your research proposals and refine your knowledge. In other words, they can offer fresh perspectives that may also be relevant. After all, they, unfortunately, have first hand experience which the subject you are researching.”

Engaging with patients introduces a different perspective on your research that can help sharpen your research proposals and refine your knowledge.

Jacco: “I fully agree. Communicating with patients can help to generate new ideas and knowledge, because they approach our subject area from a different angle and are specialized in it in a different way.”

“Let’s also not forget that within academia there is a long-standing tradition of scientists picking each other’s minds and getting new ideas at meetings with colleagues, conferences and so on. Encounters with patients build on that principle.”

Erica:
“Talking with scientists can also be inspiring in an other way. Many scientists who have been engaging with patients tell me that it made them feel more motivated to do their work. It makes the social relevance of your research at once tangible and visible.”

It can be highly stimulating to see from time to time representatives of the patient group your research results might benefit one day.

Jacco:
“Definitely. Let’s not forget that scientists are generally very passionate about their subject and that doing research is so much more than just a job. Especially at PhD and post-doc level, working beyond normal office hours is relatively common. But research is also highly laborious work. It can be highly stimulating to see from time to time representatives of the patient group your research results might benefit one day.”

Patient engagement sounds great, but when it comes to public engagement a much-heard analogy within academia is that as soon as an engineer listens to laypeople telling him or her what to do, his or her work will be in trouble. What’s your take on this?

Erica:
“I think most patients are just happy to share their experiences and will understand they cannot be in the researcher’s seat. But of course, it’s always better to avoid potential misunderstandings. One way to do so is to be very clear about the reasons you are inviting patients in and about your expectations of the conversations.”

Jacco:
“Academic freedom is, and should be, an important concern for scientists. After all, that’s what enables us to do our job well. But I don’t see patient engagement infringing upon that. For sure, consulting laypeople on the technical details of one’s job would be foolish. But patient engagement isn’t about that, it’s about finding out more about patients’ needs and wishes. Take the example of the engineer. If people no longer want fast cars, but have become interested in cheaper cars or more environmentally friendly ones instead, then that’s crucial information for him or her to know. Otherwise he or she runs the risk of creating a perfectly fast car, for which there will nevertheless be little demand, because what was actually needed was overlooked.”

Are you interested in engaging with patients, do you have ideas about it or do you need support with regards to patient engagement within your lab or institute? Please reach out to programme manager Sarah van den Boogaard at Oncode Institute.

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