Peter Kapitein is a patient advocate for the Dutch Patient group Inspire2Live. He speaks to PMF Editor Mark Glover about his work for the organisation and his own battles with cancer.
It was Friday 7 January, 2005 and Peter Kapitein remembers the day of his diagnosis as if it was yesterday. “The first moment was disastrous, it was a complete shock and my whole world just collapsed,” he recalls. Peter had been diagnosed with lymphoma, picked-up by his GP following a routine visit to have his cholesterol checked. “It was completely unexpected,” he says. “I wasn’t feeling sick, I wasn’t feeling tired. I’m a tri-athlete. I ran 100k a week, cycle 250k a week and swim 10k a week so I was completely fit.”
In 2010, the Dutch Patient Advocacy group Inspire2Live was founded, its mission to bring together clinicians, researchers and patients to collaborate pro-actively in the battle against cancer, Peter almost immediately began taking an active role in the organisation.
I suggest to Peter that such groups can be unwelcome at a table of clinicians and researchers with patient input being viewed as something of a hindrance, particularly as initiatives are driven by said clinicians and researchers. “We are aware that we are not always invited,” he explains. “We ask questions that sometimes feel uncomfortable but what we want is to sit at the table where the decisions are taken on an equal base. Of course, at such a table, you have to know what you are talking about, so all of our patient advocates are very well educated, very eloquent. We have two professors in our group, we have molecular biologists, lawyers, GPs and most of the time we are very well respected.”
The organisation, according to Peter, is one of the first patient groups that actively identifies, approaches and then invites – dependent on the topic, – key people who can make a difference in that area of cancer treatment. When the group first began, however, its approach was different to how other groups operated. “Seven or eight years ago when we started, we jumped on the plane and visited international scientists, which was new at the time and seen as not the normal behaviour of patients,” he says. “Most of the time we now encounter enthusiastic reactions. Most of the time, people want to co-operate with us.”
I had been speaking to Peter for over 45 fascinating minutes and as I ticked-off the questions I had prepared in my notebook, I saw that I was still to ask him about inspiration. When interviewing people for this site, I always conclude the conversation by asking what makes them to do what they do. Often, the answer is the same: to help people. I ask Peter if this is the same for him? “All of us in healthcare; research, regulators, all the stakeholders in healthcare are working on towards the same thing; which is giving people the possibility to live together. To live together is the essence of life.”
Peter Kapitein will be speaking at the Benelux Precision Medicine Forum in Utrecht which takes place from 12 to 13 June. You can register for the event here.