Maastricht
THE FUTURE OF HEALTH Monday, April 2 2012 Theater aan het Vrijthof, Maastricht
TEDxMaastricht
Contents Speakers Clarissa Silva Geert VandeWalle Roni Zeiger Interview Lucien Engelen Speakers Peter Nicks Yori Swart Jeroen vaan Dillen Paul F. Levy TEDxMaastricht Around the world Photo impression TEDx Maastricht Interview Corine Jansen Photo impression backstage TEDx Maastricht Illustration Esther Gons Quotes and tweets Quests
4 THE FUTURE OF HEALTH Monday, april 2 2012 Theater aan het Vrijthof, Maastricht
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Colophon Coรถrdination Linda van Schuijlenborgh Paula Mali
Photoeditor Mark Meier
Redaction Maartje Reijnders
Graphic design Winneke de Groot Jop van der Kroef Felix van Dam
Translation Danique van Kesteren
Photographers Aad van Vliet Mirella Boots
Speakers
Clarissa Silva Geert VandeWalle Roni Zeiger
4 THE FUTURE OF HEALTH
Clarissa Silva
Live with your strength,
This is a crucial condition for empowerment. Sharing
not with your weaknesses
knowledge and experiences with people who want to
‘Bizarre how fast your life can
be your ally speeds up the recovery process. The fact
change’, that is how Clarissa start-
that Clarissa - as an ex-patient - is on stage at TEDx-
ed her talk. She worked as a care-
Maastricht, speaking for thousand people, proves that
giver when she got mentally ill.
the possibilities for recovery are infinite.
She was hospitalized in a psychi-
A blog by Annemieke Bol
atric hospital for 1,5 year and noticed that family and friends distanced from her. She noticed she was treated as a diseased, not as a human. A short while after
Everybody can help Everybody
leaving the hospital she got fired. She was 27. She
knows a picture can say a thou-
isolated herself.
sand words, but it can do much
Fortunately she could keep in touch with her caregiver
more: it can help you with your
via Internet. After losing her job she also lost her home
TED talk. Geert Vandewalle admits
and she started living at Pameijer. Pameijer supports
Geert VandeWalle
disabled people to function in society. She noticed that
he has some difficulty with speaking English, but he arranged for
she had more faith in her own recovery than the
some illustrative images to get his message across.
people at Pameijer, because unfortunately they ques-
The best thing is that, even if you might not have
tioned her ability to recover.
noticed it, Geert tells us his story before he even
At Pameijer she learned how to apply her knowledge
begins. By showing the audience what is difficult for
and experience to empower herself in a way that
him, they understand him and listen more carefully.
helped her to recover. She joined the Empowerment
Someone asks him a question, others come to help.
team and learned that contact with peers is crucial for
And that is also what Blue Assist is about, to help
recovery. But instead of getting better, her panic
people with intellectual disabilities ask questions and
attacks worsened around 2010. When she had the
explain themselves so other people can help them.
chance to work at Pameijer she realized that her fear
But why is that important? Being able to manage your
for a new psychosis blocked her to live a life. This life-
own life makes you independent and being indepen-
changing conclusion gave her a new motto: ‘Start to
dent is what we all want. Geert reminded us of the
live with your strength, not with your weaknesses’.
United Nations convention for People with Disabilities.
Now she works at the PEP-team and gives workshops
More and more countries in the world are adopting
on empowerment.
this, securing a place in our society for the people who
In the recovery process, supporters and clients are
need it.
working together as a joint team with equal partners.
To illustrate his talk, he asks Peter and John on the
lems like cancer. Later on he learned that biology and
must have inspired Geert, because he performs an act
pathology also matter. During his medical study he dis-
as both Peter and John. Peter is a classic case. He is
covered: ‘I am a geek’. He saw how little doctors use
diagnosed with a disability and send away to live with
data and decided to do something about that.
others like him, in a home somewhere outside a vil-
So he ended up at Google, where he finds Google Flu
lage. While he may have a nice life, he will never fully
Trends to be his favorite tool. Based on search words,
be able to live life the way we do. John, on the other
Google creates a trend line for flu that is almost identi-
hand, has a blue screen on his smart phone. Some-
cal to the trend line from the US Centers for disease
where in the near future, everybody will know what this
control. With just a little data you can create so much.
means: someone has a question and everybody can
‘Searching data is the power of training little stories’.
help. Hopefully, this simple solution and great technol-
En passant, Zeiger announces a new search function
ogy will be adopted worldwide very soon and the blue
of Google: Google Symptoms. Google analyses diverse
screen will become an international icon. This way, we
search results real time to see which symptoms match
will grow to be a society where people with disabilities
best. Zeiger continues to tell about his travel. He
are independent and respected. With Blue Assist you
meets Jill Friedman who builds online communities for
can all help.
patients. He reads great stories. But mainly he learns
A blog by Michiel Rutjes
that a smart patient, being confronted with a mortal disease, becomes an expert in his disease. This brings him to the question: What is a patient?
Roni Zeiger
What is a patient? What is a
Unfortunately he had to become one to find an answer.
patient? Roni Zeiger, also known
You can read his story at My Health Story. Zeiger
as Dr. Google Health, knows. He
learns that he is a very impatient patient. He asks him-
takes the audience of TEDxMaas-
self and the audience: ‘How can we scale the power
tricht through a journey of technol-
of expert patients? How can we help them to do more
ogy and health and his lessons
with their expertise?’
learned. ‘Patients are experts and
Zeiger concludes that it is important for physicians that
physicians should listen to them.’ He developed this
doctors should listen to their patients. Do not only look
vision based on his professional experience and as an
at symptoms, embrace the patient story. Expert
experienced patient. Zeiger takes the TEDxMaastricht
patients are everywhere and they are impatient. They
audience on his journey to the discovery of the expert
are experts and they want to cooperate.’
patient.
A blog by Karin Oost
He originally thought, during his internship, that genetical code brings us the solution to big medical prob-
THE FUTURE OF HEALTH 5
stage. That TEDxMaastricht takes place in a theater
Between coffee and satay
An interview with the founder of TEDxMaas-
Lucien Engelen
tricht about his perso-
Text Wouter Wolters
is today.
nal drive for innovating healthcare and what made him the man he
He sold cars, ran a gas station, a car repair company,
just like the Patients Included Act is meant to create
a printing house, a funeral service, an emergency med-
awareness and to actually do something about it.
6 THE FUTURE OF HEALTH
ical service and finally ended up in the hospital with a great passion. Is there any similarity between all these
Dot on the horizon In the same way, Simon Sinek
jobs you might ask? ‘Constantly keeping an eye on the
(with his Ted-talk: ‘First why and then trust’) is a huge
needs of your target group is of crucial importance’,
inspiration for Lucien’s organic way of working. During
Lucien would say. Don’t assume you know what they
a project, everyone must constantly be aware of, and
want, ask them. The innovation of patient healthcare
focus on the why and what you have in mind. Person-
means the world for him. Lucien points out we ignore
ally he favors the mind and the gut above project
the patient far too often: ‘It’s ridiculous that during a
plans or scripts because that’s where compassion is
summit on patient healthcare we talk about patients
most vivid. In fact, it’s like riding a bicycle without
without them being present’.
using your hands to steer: when you keep focused at that certain dot on the horizon, you’ll steer automati-
Amazement This amazement instigated the birth of
cally and bridge the distance more easily.
the Patient Included Act: a quality seal that reflects whether patients are in the crowd or speak during
Drive Lucien is known for his drive, energy and ambi-
summits. Not intended as a gimmick for summits, but
tion. As you’ve heard in his talk today, the diseases of
to bring together the knowledge of healthcare profes-
his parents play a huge role in his drive to innovate
sionals and the needs of patients, which leads to a
healthcare. In 2009, he blogged about the loss of his
higher quality in healthcare. This act is meant to be a
parents to multiple forms of cancer and how they dealt
spark to ignite a debate and create awareness. Anoth-
with it. Lucien also wrote about the inspiring meeting
er idea Lucien realized is the Chief Listening Officer.
with Maarten Lens-FitzGerald and the open way in
An important position fulfilled by one of his closest
which he dealt with his cancer. When I ask him if the
colleagues, Corine Jansen. Jansen’s job? Constantly
process until the death of his parents would look dif-
listening to patients, asking for their needs to be able
ferent today, he confirms decisively: ‘Absolutely. It
to improve healthcare.
would’ve been a more jointly and therefore social process. I would have used every contact in my social
Essentials Lucien’s mission is inspired by this quote
network to get my parents the best specialists around.’
of St Francis of Assisi’s: ‘Start with the essentials.
Still, he doesn’t know if this would have changed the
Then do the possible. And then suddenly… you are
outcome. In a way, health care always characterized
doing the impossible.’ Lucien’s essential is listening to
his career. He even signed up for nursing school,
whom you are doing it for. This way you’ll find out
which his father cancelled because he could use Luc-
what’s possible. Once aware of what is possible you
ien’s talents to run his car company. But a leopard
start realizing it. This means something is only impos-
can’t change its spots, so Lucien ended up in a hospi-
sible when you don’t listen to your target group. Hence
tal anyway.
the importance of Radboud’s Chief Listening Officer,
to waste any time on talking about innovation without
at Radboud University Nijmegen Medical Centre,
actually doing it and spreading ideas. That’s also why
Lucien noticed how patients were using the Internet
90% of the TEDxMaastricht-invitees are people who
and decided he wanted to know more about it. So in
haven’t attended before: ‘We have to find and share
2008 he and his team invited Marco Derksen for an
ideas and make sure they last, to actually change
inspiration session about social media. Because Lucien
healthcare’.
did close to nothing with social media, Marco told him to go experiment and discover what social media
Start with coffee Lucien has a very open attitude to
could mean for healthcare. It inspired Lucien to great
new ideas. Contact him through social media and
extent. Barely a month later, he had to replace Marco
before you know it, you’ll be drinking a great cup of
Derksen during another inspiration session because he
coffee in his office. Determining whom to talk to is
had lost his voice. It is clear now that the experiment
merely based on his gut feeling or advice from people
got out of hand: using social media hourly to reach out
he considers do-ers. Considering it as a social event
to learn from patients and engage with others around
that ties people, everything around Lucien starts with
the world to really change healthcare.
coffee. Therefore the first step he took at Radboud was the purchase of a decent coffee machine. Where
No time to waste People close to him often describe
everything starts with coffee, every successful com-
Lucien as incredibly driven and impatient. He is con-
pleted event or project is celebrated with friends and
vinced his impatience is one of his best skills and the
satay. We can already picture him and his team cele-
basis for his achievements. On the other hand, his
brating an inspiring Future of Health 2012, being
impatience can get quite tiresome for people he works
served by a waiter with a tray of champagne and a
with and for himself. As I read through all my gathered
portion of satay, just sitting at the table enjoying the
input, it seems to me Lucien is working towards a final
team effort that was made.
deadline, like there is some sort of time bomb ticking inside of him. As I tell this to Lucien, he confirms this
About Wouter Wolters
by telling me he expects to die of cancer, like his par-
Twitter: @WouterWolters
ents, before he turns 65. That’s why he doesn’t want
Li: linkedin.com/in/whpwolters
THE FUTURE OF HEALTH 7
The experiment that got out of hand Once working
Speakers
Peter Nicks Jeroen van Dillen Paul F. Levy
8 THE FUTURE OF HEALTH
Peter Nicks
A letter from a patient to his
when he says that he wants to put the power of the
doctor I am watching a fragment
camera in the patient’s hands. Inspired by the stories
of a seemingly disoriented man in
of his wife and the footage he shot, he thinks that this
a hospital bed with a smile on his
might actually influence the experience of patients with
face. This is a somehow contradic-
illness and healthcare. Because if you talk about your
tory image. ‘Why does he have a
illness and share the emotions that come with it with
smile on his face’, I wonder. ‘This
others, your experience will change for the better. He
is my first time in a hospital’, he says with a glimpse
has seen this play out live and I hope I can experience
of disbelief in his eyes. The doctor then accordingly
the same feeling when watching his movie in the the-
congratulates him on this fact while images flash by of
atre. We as humans are social beings, with an
him running to the rescue of others.
unavoidable capability to be empathic. This causes
Impressive how a short trailer can outline the health-
that we depend on our social environment in order to
care problem in America so clearly. You feel the
survive. Through the use of cameras and movies, we
despair in patient’s eyes; you feel the powerlessness of
can extend this social environment and learn from it to
the one doctor that is present. Peter Kicks’ words add
improve our policy making.
to the understanding of the problem: ‘In the waiting
A blog by Anke Murillo Oosterwijk
room of a public hospital, it is often a competition for attention.’ He basically describes it as a battlefield where, if you are not assertive, you won’t be helped.
Three dilemmas of participa-
Most of these people are very ill and according to
tion On stage is the inside of a
Dutch standards they should be given medical care, no
hospital room. There is a bed and
matter the cost, whether insured or not. This clearly
a wall behind it that holds post-
illustrates the crisis in these hospitals.
cards. It is not very comfortable,
With the documentary The Waiting Room, Peter Knicks
Jeroen van Dillen
which is unfortunately normal for
puts a human face on this problem and show implicitly
hospitals. As a patient you can’t
what has to be changed. The movie is meant to be the
feel comfortable waiting for your diagnosis. You ask
handle of a wheel. A handle with the voices of
yourself a lot of questions about what is going to
patients, serving as an inspiration, that aggregate and
happen. There is another side to this: the doctor’s
affect the wheel of policy making in healthcare. Docu-
point of view.
menting the hearts and minds of these patients
Jeroen shows the audience the dilemmas of working
might get other patients, all over the world, more
as a young doctor in the most innovative university
involved in their own story and their own faith. Peter
hospital in the Netherlands, being so willing to deal
Knicks passion for documenting is clearly translated
with ‘compassion for care’. Doctors are eager to be a
you’re going to do before the ball touches your feet.
on a daily basis with the three dilemmas of participato-
Shooting in panic hardly ever makes you win the
ry health care: time, emotion and clinical practice.
game. But telling people how they should to think may
Time
not win you the game either, because people learn in
Of course doctors see the benefit of ‘the continuity of
different ways. Some learn by listening, some people
care’. He understands that the patient wants the
need to feel, and others learn best by copying behav-
doctor to be available, anytime. This is what makes the
ior. So this is why running a hospital is no different
patient comfortable. However, doctors cannot be avail-
than coaching a bunch of twelve year olds on the
able all the time.
soccer field. If this offends anyone working in a hospi-
Emotion
tal, read on! Coaching and teaching is not only the
A doctor also has emotion and he wants to be
core business of the soccer coach. You may have to
empathic. However, he cannot be empathic all the
swap the jersey for a suit, but a large part of a hospi-
time. He needs a ‘white coat to protect himself’ and to
tal CEO’s job consists of, yes: coaching and teaching.
do the other side of his job. That is about balancing.
Paul Levy wanted to reduce the amount of preventable
Clinical Practice
deaths and other harm in his hospital.
The doctor wants to be the guide, to find the optimal
But how do you avoid mistakes? Well, by investing in
solution together with the patient. However: who pays,
process improvement and by talking. How to deal with
who decides?
mistakes? In every other field of work, near misses do
Doctors also know fear. They fear about prosecutions,
occur every now and then. Even flagrant mistakes
for example. He asks himself over and over again:
occur. But to doctors, devoted to alleviate human suf-
How do I react? Where do I draw the line? Van Dillen
fering caused by disease, a flagrant mistake often
calls for facing these dilemmas. Doctors also have to
results in dead patients. Quite a burden.
be empowered to become the individual, empathic
Although preventable harm should be prevented,
doctor. This needs attention in the education of health-
asking for a zero percent mortality rate and no near
care professionals. We do not have the answers, but
misses is as reasonable as asking one of Levy’s girl
we can share our dilemmas and talk about it in an
teams to win the world cup final against Argentina
open and respectful way. Onwards to patient and
in1978. Doctors WILL make mistakes. Even the best
doctor empowerment!
soccer player sometimes misses. In order to build a
A blog by Eveliene Manten-Horstl
winning team, you need to create a learning environment. And learning is making mistakes. Even for the highly trained and motivated people who work in hos-
Paul F. Levy
Balls and beds: building champi-
pitals. They hate losing as much as the most spoiled
on teams in soccer… and hospi-
soccer star. The operating theatre is like a soccer field,
tals Even though he left his job
the player on the bench waiting to be sent onto the
as a CEO for the Beth Israel Dea-
field is as nervous as the patient waiting on an opera-
coness Medical Center in Boston,
tion. A good coach encourages. A good doctor may
Paul F. Levy is still passionate
say some kind words to a person in distress. You
about improving healthcare. He is
never know what impact it may have. It may win you
also passionate about soccer, having coached girl
the game.
soccer teams for twenty years, which is why he enters
A blog by Marije Elderenbosch
the stage and announces he came here to talk about soccer. He takes his sweater off, revealing a bright orange soccer jersey. According to Levy, one of the most important things in soccer is preparation. You’ve got to think about what
THE FUTURE OF HEALTH 9
guide for their patients. In doing so he is confronted
TEDx Maastricht
10 THE FUTURE OF HEALTH
Around the world
Jönköping/ Sweden Glasgow / Scotland London / UK Maastricht
Amersfoort Amsterdam Apeldoorn Arhem Breda Den Dolder Deventer Dordrecht Ede Eindhoven Enschede
Gouda Groningen Haarlem Nijmegen Poortugaal Rotterdam Tiel Utrecht Woerden Zeist Zwolle
Cleveland / U.S.A. Porto / Portugal Barcelona / Spain
Tanta / Egypt
Brisbane / Australia
THE FUTURE OF HEALTH 11
TEDxMaastricht
12 THE FUTURE OF HEALTH
Photo impression
THE FUTURE OF HEALTH 13
Interview
14 THE FUTURE OF HEALTH
Corine Jansen
Corine Jansen
When you say ‘TEDxMaastricht’, you immediately think
Chief Listening Officer. Her work is to involve with the
about Corine Jansen, one of the driving forces behind
patients and to improve care by doing so. Patients are
this event. She is the team and speaker liaison at
happy with this approach and appreciate it with an 8.2
TEDxMaastricht. In ‘normal’ life she works as a Chief
(on a scale to 10), while the average score is 7.7.
Listening Officer at Radboud Reshape and Innovation
Patients feel they are taken seriously at UMC Radboud
Centre. Her function is to create a connection between
and that is for a great part due to the work of Corine.
the patient and the health care professional. An important goal is to bring compassion back into healthcare.
Peter, an AYA patient who died in October 2010,
When it comes to patients, she always asks: ‘Did we
inspired Corine. He said ‘I want to live my life while I’m
ask the patient?’
dying and not die while I’m living’. It changed her perception towards patients. It is not all about the pro-
The basic idea is that the patient is part of the team
cess of cure; it is important that you treat patients as
together with the healthcare professionals and family.
human beings and not as patients only. See all
He is not at the centre of the team because if he is,
patients with different needs and different knowledge.
everyone talks about him. No, he really is part of the
Real contact is about listening to the other person;
team. He joins the conversation and is an equal partic-
seeing this person as a person – who happens to be
ipant. Making decisions is also a joint responsibility. It’s
ill. Great work Corine, you are an example to a lot of
a whole new way of working and a different attitude
people in healthcare.
towards patients.
Corine’s work as a Chief Listening Officer has not gone unnoticed. In February 2012 the UMC Radboud received the TNS NIPO Hostmanship award in the category Hospitals, especially because of her work as
TEDxMaastricht
Backstage
THE FUTURE OF HEALTH 15
16 THE FUTURE OF HEALTH
Illustration
Esther Gons
THE FUTURE OF HEALTH 17
TEDxMaastricht
Quotes and tweets
18 THE FUTURE OF HEALTH
Marco van Beers (Designer van ketting voor borstkanker) ‘Design for debate is necessary to shape the future of our Intimate Communication. I have designed evolving jewelry which helps breastcancer patients to share their struggle against cancer with their loved ones.’
henk eisema @eisema Naveen Jain is very inspiring! Wow! #TEDxMaastricht
YouSteps @YouSteps Ron Zeiger "We must listen to patients, not just about their symptoms, but their values and their preferences" #TEDxMaastricht #Health
Wouter Wolters @WouterWolters samen met blogteam van #tedxmaastricht ah ontbijt in Designhotel Townhouse Maastricht. Frank Schalken (Oprichter en directeur van E-hulp.nl) ‘I’m glad to see that at TEDxMaastricht patient empowerment is a big issue. Internet was made for healthcare. Internet helps patients to get in charge and find peers to share their stories with.’ Yori Swart (Singer Songwriter) ‘The key to a healthy future is a postive mind’
Fundació TicSalut @ticsalut El 65% de la població primer consulta Google i després el seu metge. #Tedxmaastricht #ticsalut
Marcel Heldoorn “I have long been convinced that a patient deserves an important role and I am glad that this day gives so much energy. We are no longer talking about the patient, but with them.”
Fine Point @Fine_Point Als ik #TEDxMaastricht tot nu toe beluister dan breken er mooie tijden aan voor patiënten. Kan niet wachten!
Peter van Helsdingen @PvHMC Clarissa Silva tijdens #tedxmaastricht: "Move from what is wrong to what is strong" Mooi en waar! Maar niet altijd makkelijk!
Doret Brandjes @doretbrandjes Goed beeld van TEDx! Zo goed, dat ik hier thuis zit mee te klappen alsof ik in de zaal zit #TEDxMaastricht Hans van Belleghem @Hansfeep De zaal gevuld, bekende gezichten, mooi programma. let the show begin! #TEDxMaastricht
Bert Kortekaas @BKortekaas En daar lig ik dan in #Rijnstate voor de afronding van het prostaatproces, zitten twee van de urologen bij #TEDxMaastricht. Succes dus daar.
Marike de Haan “Days like these give me inspiration and I use that energy to implement changes in big organizations.”
Daan Dohmen “Facetalk shows that healthcare doesn’t have to depend on time or place. Thanks to technology, the best healthcare is always around for every patient.”
Nieks @nieks Open en respectvol - keywords! #tedxmaastricht
Teresa Bau @tbau_uoc When we take control of our own destiny will be able to change the world Naveen Jain #tedxmaastricht
Fundació TicSalut @ticsalut El 65% de la població primer consulta Google i després el seu metge. #Tedxmaastricht #ticsalut
Bart Timmers “TEDx is an inspiration to make sure that we’ll perform even better tomorrow.”
Mascha van Dort @maschavandort The new bas bloem? Patients AND doctors need to be empowered. Great speech at #tedxmaastricht by dr and patient Wilna Wind “TEDx is a beautiful, inspiring day. A good example is the Bluecard. A super easy idea to make people help each other more.”
Truus Vernhout @argosadvie #tedxmaastricht: Informatie/kennis als bijproduct van zoekmachine Google, kan ook een zegen zijn!
Chantal Senger @ChantalSenger Heeee.. #livestream #tedxmaastricht foetsie!!
Alec Malmberg @AlecMalmberg Courage is being afraid but to it anyway. Clarissa Silva was long not listened to. Equal relationship is essential #tedxmaastricht
THE FUTURE OF HEALTH 19
Natalie Bunschoten @Nataliebun @ClarisSil OMG wat heb jij het goed gedaan zeg! Geen woorden voor, zo'n GROOTS gevoel! Wat ben jij een topper #TEDxMaastricht wat een power
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