Peter Kapitein

Who am I

Personal introduction

I was born June 2nd, 1960, in a small village in the upper part of the Netherlands: Anna-Paulowna. After my secondary school in Schagen, I finished my bachelor at the Library School in 1984. I’m a librarian by education. In 1998 I finished my masters in Book and Information Science. In 2012 I was honoured with a doctorate by the Free University of Amsterdam. This was for connecting the best oncology scientists of the world. It is what I still do and like. It is what still is necessary.

I met my wife at the Library School in 1983. We married in 1986 and now have two sons: Milo and Jaron ... and one grandson: Joshua.

Professional introduction

I am a Patient Advocate at Inspire2Live. This Dutch founded patient advocacy organization with a global focus connects patients, researchers and clinicians. I am also one of the founders of Alpe d’HuZes, the foundation that is most famous for the annual cycling event on mount Alpe d’Huez for fund raising for cancer. I worked almost all my life at the Central Bank of the Netherlands as a program manager and advisor for complex and politically difficult problems. My employer facilitated me in my work for Inspire2Live from 2010.

Why

Specialties

As a patient advocate, I connect patients, researchers and clinicians to further research, treatments and care, in Europe, as well as globally. I create awareness and hope where hope comes through vision. I'm able to show people their shining and radiant possibilities in every possible situation and let them exploit their talent in favour of others. I help patients to get the best cancer care and the access to the best cancer care.

As a networker, I organize international congresses and lobby the matrix of public authorities, health care organizations, insurance companies and research institutes.

I write columns, articles and books about topics that are relevant for society as a whole and for the wellbeing of patients.

I deliver lectures and talks to the best of my abilities to help patients and to show society how the way we work does not necessary benefit patients. I show my audience another way to improve this.

In my work as an advocate, presenter and writer, I always emphasise that we do not always execute what we already know. We can do better.

In my role as a program manager and advisor at the Central Bank of the Netherlands I know how to puzzle my way through difficult situations in programs and politics in this organization, which is part of an international system of central banks, the ECB. I’m used to work in heavily regulated organisations.

I’m able to show people the situation they are faced with and the possibilities to find a way out. I’m able to discuss the most difficult problems if these problems are related to governance, checks and balances and risks in these projects. I dare to ask questions.

I’m interested in and well informed about the question why we do not do the things we want to do and are able to do. What’s preventing us from doing the right things right?

Writing

My first book is telling about my life as a cancer patient and the way I delt with it. It shows a way, not the way. It is called: ‘Ik heb kanker. … En ik leef een Goed, Gelukkig en Gezond leven. In English: ‘I have cancer. ... And I live a happy and healthy life in harmony with it.’

My second book is an in-dept analysis of the way the Medical Industrial Complex works. It has been translated into English as well.

• ‘Hoe heeft het zover kunnen komen? … Een frisse blik op de gezondheidszorg’
• ‘How has it ever come to this?’

Regularly I write columns and articles about the best cancer care and access to this care.

Talks

I have provided hundreds of talks and panel discussions for audiences of dozens, hundreds and up to thousands of patients, researchers, clinicians and politicians. My public appearances have become more and more international. A good publicly available example of my talks at the Annual Congress of Inspire2Live in Amsterdam, 2022

It is about being the patient’s voice in cancer: ‘We have to make it our problem!’

You can now hear and see me talk about:

Medicines that don’t reach the patient, don’t cure

The way we work makes it so hard to bring the right medicines to the patients as quickly as possible. We need a shift in focus to achieve a better approach. I show it.

I am the master of my fate - I am the captain of my soul

You can’t prevent what happens but determine what you do with it. I’ll tell you what cancer meant for me and what I turned it into. It’s the best management course you have had.

That’s my data. Use my data

Crossroads of Privacy Regulation, Ethics, and Patient Data in Scientific Advancement: Patients want to contribute with their data. It is the medical industrial complex that prevents this. There is, however, a way out.

Do we need a paradigm shift for personalized medicine?

I’ll show you the paradigm shift from drug centric (‘we have a medicine, let’s find a group of patients for it’) towards patient centric (‘we have a patient, let’s find a medicine for her’).