Maastricht

THE FUTURE OF HEALTH

Monday, April 2 2012

Theater aan het Vrijthof, Maastricht

CoördinationLinda van SchuijlenborghPaula Mali

RedactionMaartje Reijnders

TranslationDanique van Kesteren

PhotoeditorMark Meier

Graphic designWinneke de GrootJop van der KroefFelix van Dam

PhotographersAad van VlietMirella Boots

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

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TEDxMaastrichtContents

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THE FUTURE OF HEALTH

Monday, april 2 2012

Theater aan het Vrijthof, Maastricht

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SpeakersClarissa SilvaGeert VandeWalleRoni Zeiger

Live with your strength,

not with your weaknesses

‘Bizarre how fast your life can

change’, that is how Clarissa start-

ed her talk. She worked as a care-

giver when she got mentally ill.

She was hospitalized in a psychi-

atric hospital for 1,5 year and noticed that family and

friends distanced from her. She noticed she was treat-

ed as a diseased, not as a human. A short while after

leaving the hospital she got fired. She was 27. She

isolated herself.

Fortunately she could keep in touch with her caregiver

via Internet. After losing her job she also lost her home

and she started living at Pameijer. Pameijer supports

disabled people to function in society. She noticed that

she had more faith in her own recovery than the

people at Pameijer, because unfortunately they ques-

tioned her ability to recover.

At Pameijer she learned how to apply her knowledge

and experience to empower herself in a way that

helped her to recover. She joined the Empowerment

team and learned that contact with peers is crucial for

recovery. But instead of getting better, her panic

attacks worsened around 2010. When she had the

chance to work at Pameijer she realized that her fear

for a new psychosis blocked her to live a life. This life-

changing conclusion gave her a new motto: ‘Start to

live with your strength, not with your weaknesses’.

Now she works at the PEP-team and gives workshops

on empowerment.

In the recovery process, supporters and clients are

working together as a joint team with equal partners.

This is a crucial condition for empowerment. Sharing

knowledge and experiences with people who want to

be your ally speeds up the recovery process. The fact

that Clarissa - as an ex-patient - is on stage at TEDx-

Maastricht, speaking for thousand people, proves that

the possibilities for recovery are infinite.

A blog by Annemieke Bol

Everybody can help Everybody

knows a picture can say a thou-

sand words, but it can do much

more: it can help you with your

TED talk. Geert Vandewalle admits

he has some difficulty with speak-

ing English, but he arranged for

some illustrative images to get his message across.

The best thing is that, even if you might not have

noticed it, Geert tells us his story before he even

begins. By showing the audience what is difficult for

him, they understand him and listen more carefully.

Someone asks him a question, others come to help.

And that is also what Blue Assist is about, to help

people with intellectual disabilities ask questions and

explain themselves so other people can help them.

But why is that important? Being able to manage your

own life makes you independent and being indepen-

dent is what we all want. Geert reminded us of the

United Nations convention for People with Disabilities.

More and more countries in the world are adopting

this, securing a place in our society for the people who

need it.

To illustrate his talk, he asks Peter and John on the

Clarissa Silva

Geert VandeWalle

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stage. That TEDxMaastricht takes place in a theater

must have inspired Geert, because he performs an act

as both Peter and John. Peter is a classic case. He is

diagnosed with a disability and send away to live with

others like him, in a home somewhere outside a vil-

lage. While he may have a nice life, he will never fully

be able to live life the way we do. John, on the other

hand, has a blue screen on his smart phone. Some-

where in the near future, everybody will know what this

means: someone has a question and everybody can

help. Hopefully, this simple solution and great technol-

ogy will be adopted worldwide very soon and the blue

screen will become an international icon. This way, we

will grow to be a society where people with disabilities

are independent and respected. With Blue Assist you

can all help.

A blog by Michiel Rutjes

What is a patient? What is a

patient? Roni Zeiger, also known

as Dr. Google Health, knows. He

takes the audience of TEDxMaas-

tricht through a journey of technol-

ogy and health and his lessons

learned. ‘Patients are experts and

physicians should listen to them.’ He developed this

vision based on his professional experience and as an

experienced patient. Zeiger takes the TEDxMaastricht

audience on his journey to the discovery of the expert

patient.

He originally thought, during his internship, that geneti-

cal code brings us the solution to big medical prob-

lems like cancer. Later on he learned that biology and

pathology also matter. During his medical study he dis-

covered: ‘I am a geek’. He saw how little doctors use

data and decided to do something about that.

So he ended up at Google, where he finds Google Flu

Trends to be his favorite tool. Based on search words,

Google creates a trend line for flu that is almost identi-

cal to the trend line from the US Centers for disease

control. With just a little data you can create so much.

‘Searching data is the power of training little stories’.

En passant, Zeiger announces a new search function

of Google: Google Symptoms. Google analyses diverse

search results real time to see which symptoms match

best. Zeiger continues to tell about his travel. He

meets Jill Friedman who builds online communities for

patients. He reads great stories. But mainly he learns

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?

Unfortunately he had to become one to find an answer.

You can read his story at My Health Story. Zeiger

learns that he is a very impatient patient. He asks him-

self and the audience: ‘How can we scale the power

of expert patients? How can we help them to do more

with their expertise?’

Zeiger concludes that it is important for physicians that

doctors should listen to their patients. Do not only look

at symptoms, embrace the patient story. Expert

patients are everywhere and they are impatient. They

are experts and they want to cooperate.’

A blog by Karin Oost

Roni Zeiger

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Between coffee and satayLucien Engelen

He sold cars, ran a gas station, a car repair company,

a printing house, a funeral service, an emergency med-

ical service and finally ended up in the hospital with a

great passion. Is there any similarity between all these

jobs you might ask? ‘Constantly keeping an eye on the

needs of your target group is of crucial importance’,

Lucien would say. Don’t assume you know what they

want, ask them. The innovation of patient healthcare

means the world for him. Lucien points out we ignore

the patient far too often: ‘It’s ridiculous that during a

summit on patient healthcare we talk about patients

without them being present’.

Amazement This amazement instigated the birth of

the Patient Included Act: a quality seal that reflects

whether patients are in the crowd or speak during

summits. Not intended as a gimmick for summits, but

to bring together the knowledge of healthcare profes-

sionals and the needs of patients, which leads to a

higher quality in healthcare. This act is meant to be a

spark to ignite a debate and create awareness. Anoth-

er idea Lucien realized is the Chief Listening Officer.

An important position fulfilled by one of his closest

colleagues, Corine Jansen. Jansen’s job? Constantly

listening to patients, asking for their needs to be able

to improve healthcare.

Essentials Lucien’s mission is inspired by this quote

of St Francis of Assisi’s: ‘Start with the essentials.

Then do the possible. And then suddenly… you are

doing the impossible.’ Lucien’s essential is listening to

whom you are doing it for. This way you’ll find out

what’s possible. Once aware of what is possible you

start realizing it. This means something is only impos-

sible when you don’t listen to your target group. Hence

the importance of Radboud’s Chief Listening Officer,

just like the Patients Included Act is meant to create

awareness and to actually do something about it.

Dot on the horizon In the same way, Simon Sinek

(with his Ted-talk: ‘First why and then trust’) is a huge

inspiration for Lucien’s organic way of working. During

a project, everyone must constantly be aware of, and

focus on the why and what you have in mind. Person-

ally he favors the mind and the gut above project

plans or scripts because that’s where compassion is

most vivid. In fact, it’s like riding a bicycle without

using your hands to steer: when you keep focused at

that certain dot on the horizon, you’ll steer automati-

cally and bridge the distance more easily.

Drive Lucien is known for his drive, energy and ambi-

tion. As you’ve heard in his talk today, the diseases of

his parents play a huge role in his drive to innovate

healthcare. In 2009, he blogged about the loss of his

parents to multiple forms of cancer and how they dealt

with it. Lucien also wrote about the inspiring meeting

with Maarten Lens-FitzGerald and the open way in

which he dealt with his cancer. When I ask him if the

process until the death of his parents would look dif-

ferent today, he confirms decisively: ‘Absolutely. It

would’ve been a more jointly and therefore social pro-

cess. I would have used every contact in my social

network to get my parents the best specialists around.’

Still, he doesn’t know if this would have changed the

outcome. In a way, health care always characterized

his career. He even signed up for nursing school,

which his father cancelled because he could use Luc-

ien’s talents to run his car company. But a leopard

can’t change its spots, so Lucien ended up in a hospi-

tal anyway.

An interview with the

founder of TEDxMaas-

tricht about his perso-

nal drive for innovating

healthcare and what

made him the man he

is today.Text Wouter Wolters

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The experiment that got out of hand Once working

at Radboud University Nijmegen Medical Centre,

Lucien noticed how patients were using the Internet

and decided he wanted to know more about it. So in

2008 he and his team invited Marco Derksen for an

inspiration session about social media. Because Lucien

did close to nothing with social media, Marco told him

to go experiment and discover what social media

could mean for healthcare. It inspired Lucien to great

extent. Barely a month later, he had to replace Marco

Derksen during another inspiration session because he

had lost his voice. It is clear now that the experiment

got out of hand: using social media hourly to reach out

to learn from patients and engage with others around

the world to really change healthcare.

No time to waste People close to him often describe

Lucien as incredibly driven and impatient. He is con-

vinced his impatience is one of his best skills and the

basis for his achievements. On the other hand, his

impatience can get quite tiresome for people he works

with and for himself. As I read through all my gathered

input, it seems to me Lucien is working towards a final

deadline, like there is some sort of time bomb ticking

inside of him. As I tell this to Lucien, he confirms this

by telling me he expects to die of cancer, like his par-

ents, before he turns 65. That’s why he doesn’t want

to waste any time on talking about innovation without

actually doing it and spreading ideas. That’s also why

90% of the TEDxMaastricht-invitees are people who

haven’t attended before: ‘We have to find and share

ideas and make sure they last, to actually change

healthcare’.

Start with coffee Lucien has a very open attitude to

new ideas. Contact him through social media and

before you know it, you’ll be drinking a great cup of

coffee in his office. Determining whom to talk to is

merely based on his gut feeling or advice from people

he considers do-ers. Considering it as a social event

that ties people, everything around Lucien starts with

coffee. Therefore the first step he took at Radboud

was the purchase of a decent coffee machine. Where

everything starts with coffee, every successful com-

pleted event or project is celebrated with friends and

satay. We can already picture him and his team cele-

brating an inspiring Future of Health 2012, being

served by a waiter with a tray of champagne and a

portion of satay, just sitting at the table enjoying the

team effort that was made.

About Wouter Wolters

Twitter: @WouterWolters

Li: linkedin.com/in/whpwolters

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SpeakersPeter NicksJeroen van Dillen Paul F. Levy

A letter from a patient to his

doctor I am watching a fragment

of a seemingly disoriented man in

a hospital bed with a smile on his

face. This is a somehow contradic-

tory image. ‘Why does he have a

smile on his face’, I wonder. ‘This

is my first time in a hospital’, he says with a glimpse

of disbelief in his eyes. The doctor then accordingly

congratulates him on this fact while images flash by of

him running to the rescue of others.

Impressive how a short trailer can outline the health-

care problem in America so clearly. You feel the

despair in patient’s eyes; you feel the powerlessness of

the one doctor that is present. Peter Kicks’ words add

to the understanding of the problem: ‘In the waiting

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.

Most of these people are very ill and according to

Dutch standards they should be given medical care, no

matter the cost, whether insured or not. This clearly

illustrates the crisis in these hospitals.

With the documentary The Waiting Room, Peter Knicks

puts a human face on this problem and show implicitly

what has to be changed. The movie is meant to be the

handle of a wheel. A handle with the voices of

patients, serving as an inspiration, that aggregate and

affect the wheel of policy making in healthcare. Docu-

menting the hearts and minds of these patients

might get other patients, all over the world, more

involved in their own story and their own faith. Peter

Knicks passion for documenting is clearly translated

when he says that he wants to put the power of the

camera in the patient’s hands. Inspired by the stories

of his wife and the footage he shot, he thinks that this

might actually influence the experience of patients with

illness and healthcare.  Because if you talk about your

illness and share the emotions that come with it with

others, your experience will change for the better. He

has seen this play out live and I hope I can experience

the same feeling when watching his movie in the the-

atre. We as humans are social beings, with an

unavoidable capability to be empathic. This causes

that we depend on our social environment in order to

survive. Through the use of cameras and movies, we

can extend this social environment and learn from it to

improve our policy making.

A blog by Anke Murillo Oosterwijk

Three dilemmas of participa-

tion On stage is the inside of a

hospital room. There is a bed and

a wall behind it that holds post-

cards. It is not very comfortable,

which is unfortunately normal for

hospitals. As a patient you can’t

feel comfortable waiting for your diagnosis. You ask

yourself a lot of questions about what is going to

happen. There is another side to this: the doctor’s

point of view.

Jeroen shows the audience the dilemmas of working

as a young doctor in the most innovative university

hospital in the Netherlands, being so willing to deal

with ‘compassion for care’. Doctors are eager to be a

Peter Nicks

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guide for their patients. In doing so he is confronted

on a daily basis with the three dilemmas of participato-

ry health care: time, emotion and clinical practice.

Time

Of course doctors see the benefit of ‘the continuity of

care’. He understands that the patient wants the

doctor to be available, anytime. This is what makes the

patient comfortable. However, doctors cannot be avail-

able all the time.

Emotion

A doctor also has emotion and he wants to be

empathic. However, he cannot be empathic all the

time. He needs a ‘white coat to protect himself’ and to

do the other side of his job. That is about balancing.

Clinical Practice

The doctor wants to be the guide, to find the optimal

solution together with the patient. However: who pays,

who decides?

Doctors also know fear. They fear about prosecutions,

for example. He asks himself over and over again:

How do I react? Where do I draw the line? Van Dillen

calls for facing these dilemmas. Doctors also have to

be empowered to become the individual, empathic

doctor. This needs attention in the education of health-

care professionals. We do not have the answers, but

we can share our dilemmas and talk about it in an

open and respectful way. Onwards to patient and

doctor empowerment!

A blog by Eveliene Manten-Horstl

Balls and beds: building champi-

on teams in soccer… and hospi-

tals Even though he left his job

as a CEO for the Beth Israel Dea-

coness Medical Center in Boston,

Paul F. Levy is still passionate

about improving healthcare. He is

also passionate about soccer, having coached girl

soccer teams for twenty years, which is why he enters

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

you’re going to do before the ball touches your feet.

Shooting in panic hardly ever makes you win the

game. But telling people how they should to think may

not win you the game either, because people learn in

different ways. Some learn by listening, some people

need to feel, and others learn best by copying behav-

ior. So this is why running a hospital is no different

than coaching a bunch of twelve year olds on the

soccer field. If this offends anyone working in a hospi-

tal, read on! Coaching and teaching is not only the

core business of the soccer coach. You may have to

swap the jersey for a suit, but a large part of a hospi-

tal CEO’s job consists of, yes: coaching and teaching.

Paul Levy wanted to reduce the amount of preventable

deaths and other harm in his hospital.

But how do you avoid mistakes? Well, by investing in

process improvement and by talking. How to deal with

mistakes? In every other field of work, near misses do

occur every now and then. Even flagrant mistakes

occur. But to doctors, devoted to alleviate human suf-

fering caused by disease, a flagrant mistake often

results in dead patients. Quite a burden.

Although preventable harm should be prevented,

asking for a zero percent mortality rate and no near

misses is as reasonable as asking one of Levy’s girl

teams to win the world cup final against Argentina

in1978. Doctors WILL make mistakes. Even the best

soccer player sometimes misses. In order to build a

winning team, you need to create a learning environ-

ment. And learning is making mistakes. Even for the

highly trained and motivated people who work in hos-

pitals. They hate losing as much as the most spoiled

soccer star. The operating theatre is like a soccer field,

the player on the bench waiting to be sent onto the

field is as nervous as the patient waiting on an opera-

tion. A good coach encourages. A good doctor may

say some kind words to a person in distress. You

never know what impact it may have. It may win you

the game.

A blog by Marije Elderenbosch

Paul F. Levy

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TEDx MaastrichtAround the world

Tanta / Egypt

Brisbane / Australia

Jönköping/ Sweden

Cleveland / U.S.A.

Porto / Portugal

Barcelona / Spain

Glasgow / Scotland

London / UK

Maastricht

Amersfoort AmsterdamApeldoornArhemBredaDen DolderDeventerDordrechtEdeEindhovenEnschede

GoudaGroningenHaarlemNijmegenPoortugaalRotterdamTielUtrechtWoerdenZeistZwolle

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TEDxMaastrichtPhoto impression

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InterviewCorine Jansen

When you say ‘TEDxMaastricht’, you immediately think

about Corine Jansen, one of the driving forces behind

this event. She is the team and speaker liaison at

TEDxMaastricht. In ‘normal’ life she works as a Chief

Listening Officer at Radboud Reshape and Innovation

Centre. Her function is to create a connection between

the patient and the health care professional. An impor-

tant goal is to bring compassion back into healthcare.

When it comes to patients, she always asks: ‘Did we

ask the patient?’

The basic idea is that the patient is part of the team

together with the healthcare professionals and family.

He is not at the centre of the team because if he is,

everyone talks about him. No, he really is part of the

team. He joins the conversation and is an equal partic-

ipant. Making decisions is also a joint responsibility. It’s

a whole new way of working and a different attitude

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 cat-

egory Hospitals, especially because of her work as

Chief Listening Officer. Her work is to involve with the

patients and to improve care by doing so. Patients are

happy with this approach and appreciate it with an 8.2

(on a scale to 10), while the average score is 7.7.

Patients feel they are taken seriously at UMC Radboud

and that is for a great part due to the work of Corine.

Peter, an AYA patient who died in October 2010,

inspired Corine. He said ‘I want to live my life while I’m

dying and not die while I’m living’. It changed her per-

ception towards patients. It is not all about the pro-

cess of cure; it is important that you treat patients as

human beings and not as patients only. See all

patients with different needs and different knowledge.

Real contact is about listening to the other person;

seeing this person as a person – who happens to be

ill. Great work Corine, you are an example to a lot of

people in healthcare.

Co

rine

Jan

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TEDxMaastrichtBackstage

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IllustrationEsther Gons

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TEDxMaastrichtQuotes and tweets

Hans van Belleghem @Hansfeep

De zaal gevuld, bekende gezichten,

mooi programma. let the show begin!

#TEDxMaastricht

YouSteps @YouSteps

Ron Zeiger "We must listen to patients,

not just about their symptoms, but their

values and their preferences"

#TEDxMaastricht #Health

Fine Point @Fine_Point

Als ik #TEDxMaastricht tot nu toe

beluister dan breken er mooie tijden

aan voor patiënten. Kan niet wachten!

Wouter Wolters @WouterWolters

samen met blogteam van

#tedxmaastricht ah ontbijt in

Designhotel Townhouse Maastricht.

Fundació TicSalut @ticsalut

El 65% de la població primer consulta

Google i després el seu metge.

#Tedxmaastricht #ticsalut

Peter van Helsdingen @PvHMC

Clarissa Silva tijdens #tedxmaastricht:

"Move from what is wrong to what is

strong" Mooi en waar! Maar niet altijd

makkelijk!

henk eisema @eisema

Naveen Jain is very inspiring! Wow!

#TEDxMaastricht

Frank Schalken (Oprichter en directeur

van E-hulp.nl)

‘I’m glad to see that at TEDxMaastricht

patient empowerment is a big issue. In-

ternet was made for healthcare. Internet

helps patients to get in charge and find

peers to share their stories with.’

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.’

Yori Swart (Singer Songwriter)

‘The key to a healthy future is a postive

mind’

Doret Brandjes @doretbrandjes

Goed beeld van TEDx! Zo goed, dat ik

hier thuis zit mee te klappen alsof ik in de

zaal zit #TEDxMaastricht

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.”

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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

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

Chantal Senger @ChantalSenger

Heeee.. #livestream #tedxmaastricht

foetsie!!

Mascha van Dort @maschavandort

The new bas bloem? Patients AND doctors

need to be empowered. Great speech at

#tedxmaastricht by dr and patient

Truus Vernhout @argosadvie

#tedxmaastricht: Informatie/kennis als

bijproduct van zoekmachine Google,

kan ook een zegen zijn!

Alec Malmberg @AlecMalmberg

Courage is being afraid but to it anyway.

Clarissa Silva was long not listened to.

Equal relationship is essential

#tedxmaastricht

Nieks @nieks

Open en respectvol - keywords!

#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.

Bart Timmers

“TEDx is an inspiration to make sure that

we’ll perform even better tomorrow.”

Marike de Haan

“Days like these give me inspiration and

I use that energy to implement changes

in big organizations.”

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.”

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.”

Health Valley is made possible by:

The following organizations are kindly disposed towards TEDx Maastricht and contribute to the realization of this magazine: