Eveliene Manten-Horst planned on a career in a laboratory after her studies in Biomedical Science. But after she earned her PhD, she changed course. Together with health care professionals and young cancer patients, she helps make the lives of AYAs (Adolescent & Young Adult) with cancer a bit more pleasant. ‘The most fun thing is to bring people together and to challenge them to stand in their strength, despite their illness. And I still do that.
Eveliene is a bit late. The meeting before our interview went on longer than expected, and she pokes her head around the corner to apologise that she still has to say goodbye to a few people. But when we get started 10 minutes later, she hasn’t lost any of her enthusiasm. “What a great meeting! Those people are all so enthusiastic! We’re going to build an app for and with AYAs, called ‘appetizer to contact’, to make it easier for them to communicate with the people around them. When you have cancer, your friends and family often have trouble making contact and talking about trivial or important issues. They assume you have something else on your mind. I noticed that when I had cancer myself: you suddenly feel really alone. AYAs feel that even more so, because there’s a taboo on cancer at a young age. The app should make it a lot easier to communicate what you need as an AYA, or what you as a friend or family member can offer them.”
A few steps back. AYA Netherlands is what you do, but it is also a group of people. Can you explain? “Cancer is fairly rare in young people aged 18 to 35: only 2,700 new cases per year. There’s a good safety net for young children, and all sorts of treatment programmes for the elderly. But the group in between missed the contact with other AYAs, as well as an up-to-date integrated treatment programme with room for both the physical and the psychological sides of the disease. Five years ago, we at the Radboud UMC started bringing AYAs and health care professionals together in order to improve their care. Since then, it has grown into the National AYA ‘Young & Cancer’ Platform, where professionals and AYAs from the eight academic hospitals and a few others all work together.”
‘There’s a taboo on cancer at a young age’
What makes cancer different for this group of people? “They’re in a different phase of life. They still have to figure it all out. At an age when most people are thinking about what to do with the rest of their lives – whether or not to have children, choosing a career – they’re suddenly confronted with the possibility that the ‘rest’ of their life might not last that long. In that situation, a lot of people have difficulty talking to others about it. There are two AYA policlinics today, and another two more are planned – our goal is to eventually have six – that combine medical care, treatment and psycho-social coaching. Several hospitals also have a meeting place for AYAs, and there is an online community where AYAs all over the Netherlands can meet one another online. We improve the care, conduct research and develop study programmes. And we’re also working on how-do-I-stay-in-contact tools, like the app. If it were up to me, in 10 years AYA care would be the most normal thing in the world in the Netherlands.”
You studied Biomedical Science. It seems that there are some steps missing between that and fighting for better contact between doctors and patients. “I think it’s important that patients can have control over their own disease process. We’re still too quick to think: the doctor is the professional, so he or she probably knows best. That’s why you have to actually talk with the patients. Because things get better when you work together. And I enjoy being able to contribute to that dialogue. That’s one of the things I learned at the VU.”
How did that come about? “I originally enrolled at the VU because I come from a Calvinist family. The VU was the obvious choice. But what I found there, was a really warm feeling, and lectures that were riddled with ‘why’ questions: why do you do that? What is the point of things, and how can you change them? Do we really want to do everything we are able to do? If you want to heal the patient, but you ignore what the patient thinks is important, then you lack that moral compass. It doesn’t matter what answer you come to. It might be based on your convictions or ideals, but the main thing is that you ask the question.
‘I wanted to find a different way to make a difference’
“For me, the realisation came after I earned my PhD. I had already noticed that I had a talent for bringing people together. During my onco-immunological research, I came into contact with hematologists, pathologists, oncologists and immunologists, and a whole lot of patients. The solution to many questions was often a combination of expertise from the different perspectives of both the patient and the professional. But when I got a postdoc position at the AMC, I lost that patient aspect. It was like the driver had disappeared.”
How did you solve that? “I went to the Executive Board and said: “It’s great how you keep the whole hospital running. Is there some way I can help?” Luckily, there was: they were working on implementing annual reviews for the professors, but it wasn’t going well. So I was able to act as a leadership developer. Doctors often don’t have a lot of respect for that kind of paper-pusher positions, but I asked them why the discussions weren’t held, and then I talked about a symposium poster hanging there on the wall. I spoke their language.”
Did that cost you your academic career? “I think it did, but I have no regrets. I stopped doing research, because I wanted to find another way to be available and make a difference. If you continue to provide purely technical care, then you might heal the body, but you won’t heal people’s minds; you won’t help people to stand in their strength. I enjoy when I can help make positive changes in health care together with patients and health professionals.”
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