IN VIVO #2

participatory medicine www.invivomagazine.com

Think health

No. 2 – MARCH 2014

The New Era Of

participatory medicine

IN EXTENSO Dreams decoded In Vivo No. 2 – March 2014

social networks / ELECTRONIC HEALTH RECORDS / biobanks MATTHIEU RICARD Cultivating altruism GIVING BLOOD Overly strict standards PHARMA Drugs too can die Published by the CHUV www.invivomagazine.com IN EXTENSO DREAMS DECODED

EMPATHY

CARE

EDUCATION COMPETENCE

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El Bibliomata / El mundo fisico, 1882

on www.invivomagazine.com

IN VIVO / No. 2 / marCH 2014

contents

FOCUS

19 / big data Patients show it all The fast-growing world of participatory medicine is revolutionising research. by benjamin keller, melinda marchese and julie zaugg

MENS SANA

30 / Interview Matthieu Ricard encourages altruism

by PAULE GOUMAZ

34 / innovation Telemedicine: going to great lengths by jean-christophe PIOT

38 / prospecting Giving blood: overly strict standards threaten supply by céline bilardo

42 / trends When medicine goes too far

46 / decoding Drugs too can die by sophie Gaitzsch

This virtual profile was calculated using several pictures of real people.

This average face produced for “In Vivo” by The Face Research Lab of the Institute of Neuroscience and Psychology at the University of Glasgow is a metaphor for the collection of individual biological data, which is the basis of participatory medicine.

www.facelab.org

by stanislas cavalier

CONTENTS

64

30 50 CORPORE SANO

IN SITU

50 / innovation

11 / health valley

Thought-controlled prostheses

Hans Wallstén, inventor of the stent

By thomas pfefferlé

53 / Trends

58

Meditation as therapy

15 / around the world Creating bone from fat

BY geneviève ruiz

Microbes, our 100 trillion friends by jean-christophe Piot

58 / in the lens Death immortalised

by Bertrand Tappy

64 / innovation The superpowers of stem cells by julie zaugg

follow us on twitter: invivo_chuv

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CURSUS

70 / commentary Healthcare faces the challenges of innovation

72 / portrait The research of neuroscientist Eveline Geiser

74 / tandem Retinologist Francine Behar-Cohen and geneticist Carlo Rivolta

François Van Zon, istock, EPFL – Hillary Sanctuary, cumRL

56 / prospecting

Editorial

Are digitised patients being exploited?

Patrick dutoit

Béatrice Schaad Chief editor

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Slogans such as “Our experience fuels innovation” and “Together, let’s change medicine” are now emblazoned on websites that allow patients to share their experiences. These catchphrases certainly have an activist ring to them, seemingly indicating a shift from political engagement to a new form of medical citizenship. “Time for Outrage” was the title of Stephane Hessel’s million-copy bestselling tract. But the new battle cry among those who willingly divulge details about their treatment or DNA to millions of readers might be “Time for Telling All”. These digitised patients are creating what could be dubbed a true “scientific participative democracy” (see p. 19).

One thing is certain: though this online activity does benefit patients by offering them a support network as they struggle with their illness and the complexity of the health system, it radically alters the doctor-patient relationship. The physician in Tolstoy’s “The Death of Ivan Ilyich” was an omnipotent figure, but doctors now deal with patients who are experts in their own health and who can check diagnoses by consulting with hundreds of thousands of other sufferers. What’s more, today’s homo scientificus monitors his health continuously, measuring his heart rate, the proportion of fat in his blood cells and even timing his sleep to the nanosecond. Last but not least, this new take on medicine inevitably impacts confidentiality, the Holy Grail of clinical practice. The Millennial generation, which grew up with the Internet, has no qualms about publishing the most intimate details of their life. Naturally, this includes information about their health.

But patients aren’t the only ones revealing their data to the public.

Scientists are doing the same thing. By sharing knowledge, instead of keeping it separated between laboratories, unexpected progress could be made in research and clinical practice. That’s the hope of the teams involved in the Human Brain Project, which aims to simulate the functioning of the brain on a supercomputer (see p. 8).

But with greater transparency comes new requirements. Data must be managed with the utmost care and, above all, it must actually benefit the patient. A lot is at stake right now, with financial and confidentiality issues being the most important. The PatientsLikeMe network, with 250,000 contributors, has established partnerships, under the guise of research, with pharmaceutical companies such as UCB, Novartis and 23andMe, which markets genetic profiling kits. One of the potential dangers is allowing this data to become just another consumer good, as patients benefiting from this experience-sharing would have to disclose vital information about their own health in return. Big Data needs a framework, and it needs one quickly, so that digitised patients don’t end up as exploited patients. ⁄

post-scriptum UPDATES ON PREVIOUS “IN VIVO” ARTICLES YOU CAN SUBSCRIBE TO “IN VIVO” OR REQUEST BACK ISSUES ON OUR WEBSITE www.invivomagazine.com

WATSON

INNOVATION p. 38

$1 billion investment IBM created a new business unit in January, the Watson Group, responsible for developing its supercomputer.

The firm will also invest over $1 billion to market other cognitive innovations along with Watson. The new marketing unit will comprise 2,000 experts, and its head office will be in New York’s Silicon Alley. /

IV n°1

p. 13

Google expands into the health sector

DNA IV n°1

p. 42

Ban on sales 23andMe had to rethink its offering at the end of 2013.

The Food and Drug Administration ordered the company to stop selling its genetic testing kits due to the inaccuracy of their results. The California firm has dicontinued delivering medical-related conclusions but continues to sell kits to consumers who want to obtain information about their ancestral origins. Techfreedom, a think tank that promotes technology, has gathered 10,000 signatures in support of 23andMe. /

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IV n°1

At the end of 2013 Google launched Calico, a company that aims to improve medical care for elderly people. The company seeks to develop new treatments by analysing vast quantities of data gathered from patients. But Google’s ambitions in the health field don’t stop there. The internet giant is currently developing a contact lens that can measure a person’s blood glucose level. The product would spare diabetics from the daily finger prick. Google’s smart contact lens is currently in the prototype stage, but the company is reportedly already in contact with the Food and Drug Administration with regard to obtaining certification. /

p. 30

Disappointing figures The figures for 2013 published

by Swisstransplant at the end of January painted a gloomy picture. The number of patients having received a transplant remained unchanged compared to the previous year, at 470.

Some 1,270 people are currently awaiting an organ, up 10% compared to the previous year. / google

IV n°1

GIVING ORGANS

COMA IV n°1

p. 46

Patent filed A patent was filed, via the Technology Transfer Office (PACTT), for the discovery made by the University of Lausanne (UNIL) and Lausanne University Hospital (CHUV) teams on predicting the probability that a comatose patient will wake up. Marzia De Lucia and Athina Tzovara were the inventors. “We wanted to develop software that automatically integrates the measurements and calculations,” says project coordinator Marzia De Lucia of the Centre for Biomedical Imaging at the CHUV. “We are already in contact with several potential partners in order to think about how to develop an instrument that could incorporate this programme.” /

post-scriptum

cancer IV n°1

p. 17

Remaining cautious

3D-babies

The special feature in the first issue of In Vivo investigated the promising combination of the Yervoy and Nivolumab molecules in fighting cancer.

But the hype died down at the end of January, when US pharmaceutical laboratory Bristol-Myers Squibb announced its intention to extend testing before releasing its product onto the market. This sign of caution also caused the lab’s share price to drop. Using immunotherapy to fight cancer was nevertheless voted “Breakthrough of the Year” in 2013 by the prestigious Science magazine. /

E-Cigarette IV n°1

p. 14

Mixed results

3D IV n°1

p. 62

Printed fetuses In January 2014, the French 3D printing is constantly opening new doors in the medical field.

National Authority for Health California firm Organovo, which specialises in bioprinting, (Haute Autorité de Santé) announced at the end of January that it had successfully printed was cautious in its comments human liver tissue. US website 3D Babies, however, created a buzz on the harmfulness of the by using the technique to print 3D figurines of fetuses. Each plastic highly popular e-cigarette: baby costs between $200 and $600, depending on size. The pro“The electronic cigarette is not cedure requires a prolonged ultrasound, which poses risks for the recommended at this point in time, but its use is not discour- infant and can affect, in particular, the brain and eyes of the fetus aged. We do not have enough during the first three months of pregnancy, according to the French National College of obstetricians and gynecologists. / scientific data on its efficiency SEE 3D PRINTING IN USE AT THE CHUV AT WWW.INVIVOMAGAZINE.COM and harmlessness.” /

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Thanks to its university hospitals, research centres and numerous start-ups specialising in healthcare, the Lake Geneva region is a leader in the field of medical innovation. Because of this unique know-how, it has been given the nickname “Health Valley”. In each “In Vivo” issue, this section starts with a depiction of the region. This second map was created by the illustrator Steebz from the Belgian design studio Khuan + Ktron.

in situ

Health Valley An overview of medical innovation in Western Switzerland.

ROMONT p. 09

NEUCHÂTEL p. 09

PAUDEX p. 11

LAUSANNE p. 10

The Basel-based company PharmaFocus will set up operations, creating 200 jobs in Romont.

Stent inventor Hans Wallstén is constantly working on medical innovation.

MONTHEY p. 12

Swortec devices are improving quality of life for the disabled.

GENEVA p. 08

Steebz at KHUAN+KTRON

The incredibly ambitious Human Brain Project has been launched to understand the structure of the human brain and how it functions.

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The start-up One Drop Diagnostics is developing a device to confirm a heart attack within a few minutes.

Investing in medtech: a topic discussed at the new Swiss Tech Convention Center in April.

in situ

HEALTH VALLEY

in SITU

HEALTH VALLEY

Understanding the human brain In the Lake Geneva region, a number of promising projects focus on developing neurological technology. Today, the Human Brain Project cements Health Valley’s position as a centre for excellence in neuroscience.

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text Céline Bilardo

ABOVE: richard frackowiak, a co-initiator of the Human Brain Project, and 3D colour images of neurons.

the most promising neurological rehabilitation researchers in the world, is spearheading Project Re-walk at the EPFL. The initiative seeks to use neurostimulation to assist in the rehabilitation of spinal cord injury victims. He demonstrated how a paralysed rat gradually regained the use of its legs and was able to move them voluntarily. “Our success comes in stages,” he says. “After testing rats, we are conducting tests on monkeys in collaboration with professor Eric Rouiller at the University of Fribourg. In addition, eight voluntary patients with incomplete spinal cord injury from the CHUV will also test our system this year.”

The right environment Also at the Lausanne campus, Aleva Neurotherapeutics is revolutionising technology for brain electrode implants. The start-up has designed a microelectrode that drastically reduces the side effects from treating neurological disorders such as Parkinson’s disease.

The company’s director, Jean-Pierre Rosat, believes that the Lake Geneva region’s development and success as a centre for excellence in neuroscience is the fruit of efforts led for over ten years by EPFL president Patrick Aebischer. “He set up the School of Life Sciences in 2012 and did what it took to build up an adequate critical mass.

He brought in the world’s best engineers, who could work with the best biologists and doctors to develop the study of neuroscience and its clinical applications.”

Patrik Vuilleumier agrees. He is the director of the Geneva Neuroscience Centre, which is active in the use of neuroimaging to observe emotions. “The collaboration between Lausanne and Geneva has played a role in this success. We are taking advantage of our geographical proximity to share our expertise in different areas.” ⁄ see TEDx on www.invivomagazine.com

BBP / EPFL, Alain Herzog / EPFL

NEUROSCIENCE “We do not understand the human brain very well.” Richard Frackowiak, chief of the Neurology Service at the Lausanne University Hospital (CHUV) and co-founder of the Human Brain Project (HBP), measures the challenges posed by the European project that he launched with Henry Markram of the Swiss Federal Institute of Technology in Lausanne (EPFL) and Karlheinz Meier of Heidelberg University. The HBP aims to bring together more than a thousand computer engineers and experts in clinical andfundamental neuroscience to understand the structure of the human brain and how it functions. “Today, we don’t have an overall vision of the brain, its connections or exactly how it works.”

The Human Brain Project is supported by the European Commission and will receive €1 billion in funding over 10 years (as this issue went to press, this funding was thrown into question following the approval of the anti-immigration initiative in Switzerland). The funding will make it possible to compile all the data on studies of the brain from participating hospitals in a supercomputer to create a virtual model. “If we reach our goal, we will be able to use this information to better diagnose and predict neurodegenerative diseases as well as develop drugs that are less costly and more efficient. As things stand, no less than 35% of Alzheimer’s disease diagnoses are wrong!”

Campus Biotech in Geneva will be one of the project’s hubs. The HBP illustrates the innovative work being led in Frenchspeaking Switzerland to understand the brain. From Geneva and Lausanne to Fribourg and Valais, all university laboratories are helping develop neuroscience in Health Valley. “French-speaking Switzerland is especially advanced in terms of using fundamental neuroscience research in clinical applications,” says Michel Christoph, president of the Swiss Society for Neuroscience.

Grégoire Courtine, considered one of

in situ

HEALTH VALLEY

Start-up REHABILITATION

New operations

PharmaFocus comes to Romont

Romont In 2014, the Fribourg canton will become home to PharmaFocus, a Basel-based wholesaler of pharmaceutical products. The company is set to move to a new head office located in Romont. PharmaFocus will also open its new distribution centre at the Fribourg site. Two hundred jobs will be created and more than 5 million Swiss francs invested over the next five years.

New pharmaceutical company near Nyon Eysins UK pharmaceutical company Quotient Bioresearch announced that it will set up operations at the Terre-Bonne business park in Eysins in the first half of 2014. Fifty employees will occupy what could become the group’s head office for Europe, the Middle East and Asia.

Application

Echo 112 Echo 112 is used to locate a person in an emergency situation anywhere in the world, with an accuracy of just a few metres – and without an internet connection. This free application was developed

by Jocelyn Corniche, Patrick Schoettker and Paul Moix, emergency physicians at the CHUV. www.echo112.com

THE NUMBER

3 million. The amount of money raised

by Spinomix, a Lausanne-based company that develops molecular diagnostics technologies. The funds will be used to strengthen the firm’s collaboration with the in vitro diagnostics industry.

3

The Lausanne-based company, Mindmaze, has designed MindplayPro, a device featuring fun rehabilitation exercises for stroke victims. Patients are filmed and can see their virtual character moving on two screens.

The device has already been tested at the CHUV and Stanford Stroke Centre (USA).

DIAGNOSTICS

The Neuchâtel-based start-up, One Drop Diagnostics, has developed a device that aims to confirm a heart attack in less than ten minutes. It requires just a single drop of blood on a single-use chip, and the results are sent via bluetooth or Wi-Fi to a computer or smartphone. The company is looking to raise 2 million Swiss francs.

ALLERGIES

Abionic, a spin-off of the EPFL, was voted the third-best Swiss medtech start-up in 2013.

The company offers an innovative allergy diagnostics solution.

Its Abioscope device can generate a patient’s allergy profile in less than 20 minutes. All it takes is a drop of blood. The start-up was recently awarded a 500,000 Swiss franc loan by the Foundation for Technological Innovation.

RETINA

“We transplant pig cells into patients with diabetes” Philippe Morel In a January 2014 interview with Matin Dimanche, Philippe Morel, chief of the Visceral Surgery Service at Geneva University Hospitals, said that a unique technology used to transplant pancreatic islets from pigs could revolutionise diabetes treatment.

9

Second Sight continues to rack up awards. The Lausanne-based company was named a 2014 Technology Pioneer by the World Economic Forum and featured in Time Magazine’s list of 25 Best Inventions of the Year 2013.

It has developed an implant enabling the blind to regain partial vision. So far, eighty people have had the operation.

in SITU

HEALTH VALLEY

Blood tests on touchscreens

Want to perform a blood test on yourself? Just apply a sensor-equipped biofilm to your smartphone’s touchscreen. The process, developed by the start-up Qloudlab, is still being tested and will be used for applications such as measuring blood coagulation.

Mhealth fast-pace growth of mobile healthcare

A chip used to monitor vital signs

An electronic chip integrated into smartphones was developed by the start-up Leman Micro Devices and is used to monitor a number of vital signs. By placing the second phalanx of their index finger on the screen, users can determine their blood pressure, body temperature and blood oxygen level.

A number of technologies are turning smartphones into medical diagnostics devices.

The heart under control

An overview of the innovations from western Switzerland.

The start-up Smartcardia has developed a small portable device for the remote monitoring of cardiac patients. The system sends data to a smartphone, which then forwards the information to a doctor or hospital if a cardiac anomaly is detected.

Calendar All about the brain 10 to 16 March 2014

Investing in Medtech 29 and 30 April 2014, Lausanne

The 15th annual International Brain Week will be held in major Swiss cities this March. The event will include conferences and exhibitions where researchers and doctors will present to the public the latest discoveries on the brain.

Entrepreneurs and investors will come to the new Swiss Tech Convention Centre for the 18th MedTech Investing Europe Conference. The agenda includes conferences for learning about the latest innovations and tips for making the right investments.

www.lasemaineducerveau.ch

www.medtechinvesting.com

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eHealth issues 6 June 2014, Sierre

TechnoArk is hosting the second edition of eHealth Day, a series of conferences and discussions on the issues and challenges of eHealth. The event is open to anyone interested in healthcare and medical technology. www.theark.ch/e-health

High-precision synergy 17 to 20 June 2014, Palexpo Geneva

Watchmaking, microtechnology and medtech. These three high-precision fields will bring together more than 700 exhibitors for the annual EPHJ-EPMTSMT trade show. www.ephj.ch

in situ

HEALTH VALLEY

Hans Wallstén, inventor of the stent Based in the Lausanne region since the 1970s, the entrepreneur has revolutionised care for multiple diseases via his inventions.

At age 90, Hans Wallstén has not lost an ounce of enthusiasm.

Sitting at his desk in Paudex (Vaud), overlooking the lake, he calmly recounts the steps in his career. Opposite him, small, carefully labelled and organised boxes contain models of his greatest invention, the stent – a major medical innovation. The tiny metal device is implanted in the body without surgery. It is used to stop the narrowing (stenosis) of a cavity in an organism, such as a coronary artery to prevent a heart attack, for example. “Several variations of the stent have been developed since my invention in the 1980s,” says the native of Sweden. “Today, an estimated two million stents are implanted worldwide every year.”

Originally, this graduate of Chalmers University of Technology worked in a sector very different from medicine. “Until age 45, I had a career in the paper industry in Sweden,” he says. “I developed several processes to improve paper manufacturing. Then I ran a paper mill for several years.” At the end of the 1960s, the Swedish Bonnier Group contacted him, offering him funding to set up a company to market his inventions.

Hans Wallstén accepted, and that is how his first company, Inventing, came to be. “I set it up and successfully developed it in Sweden for five years before coming to Lausanne in 1973 to create another development centre,” he says.

He stumbled into the medical field by chance. “In 1979, Zurichbased cardiologist Ake Senning 11

dom smaz / rezo

Text Céline Bilardo

asked me to collaborate on a project to develop a spiral-shaped prosthesis to prevent stenosis. But the device wasn’t effective.”

Research continued at Inventing, and Hans Wallstén designed a self-expanding metal meshwork tube. He filed a patent for the implant in 1982 and, with financial backing from Bonnier, founded the company Medinvent in Villars-Sainte-Croix to develop the invention.

Following a number of tests on animals, this initial stent, dubbed the “Wallstent”, was implanted through a catheter in the small coronary arteries of a human patient for the first time ever in 1986 at Toulouse University Hospital, then at the Lausanne University Hospital. The device met with resounding success. By 1989, 1,200 Wallst-

ents had been implanted. That same year, Medinvent was sold to US pharmaceutical giant Pfizer.

Though nearing retirement, the inventor kept his creativity flowing.

He tackled the problem of menorrhagia, heavy menstrual bleeding that affects one in ten women and requires surgery and hospitalisation. Hans Wallstén then developed “Cavaterm”, a solution used to treat menorrhagia in 15 minutes using a heat balloon. The entrepreneur started his last company, Wallstén Medical (now Veldana Medical), in Morges.

Even since then, Hans Wallstén has not stopped inventing.

He recently applied for a new medical patent. “I will never stop thinking about how to innovate,” he says. “My job is my only retirement hobby.” ⁄

in SITU

HEALTH VALLEY

second stop

MONTHEY Swortec

ON THE ROAD

In each issue, “In Vivo” travels to meet with companies based in Health Valley.

Second stop: Monthey in the Valais.

Helping patients become physically active again Swortec’s new devices give disabled patients greater muscular control. text: William Türler

Swortec is on a mission to combine several rehabilitation techniques such as mobilisation, electro-stimulation and load-resistance exercise into a single device. The company, founded at Monthey in the Valais region in 2006, has developed two medical breakthroughs: MotionMaker™, a stationary device that helps disabled patients relearn to control their lower limbs, and WalkTrainer™, a mobile apparatus for learning how to walk again.

“With our devices, muscular electrostimulation occurs only when needed for carrying out a particular exercise.

That’s one of our main innovations,” says Ismaël Perrin, technical manager at Swortec. The preliminary results of the clinical studies carried out with Lausanne University Hospital (CHUV) are already very encouraging. “We saw definite improvement in patients’ ability to control their lower limbs,” adds Ismaël Perrin.

“Guided by the stimulations, 12

the patients said they better understood how to use their muscles.”

Swortec has produced eight MotionMakers to date. Its clients include Swiss institutions, such as the Rehabilitation Clinic of French-speaking Switzerland (SUVA) and the Swiss Paraplegic Centre (CSP) in Nottwil, and foreign medical facilities. So far, over a hundred patients have used the company’s equipment.

“Our devices allow patients to begin a controlled physical activity four to six weeks after an accident,” says Ismaël Perrin. He recommends about three individual sessions per week for three to five months at least. What’s surprising is that, while the devices were initially designed for incomplete paraplegics, they are now used to treat complete paraplegics, quadriplegics and patients with cerebral palsy. The goal is not only to teach patients to walk again, but also to reduce the side effects of long-term immobility. ⁄ www.swortec.ch

in SITU

HEALTH VALLEY

benoît dubuis Engineer, entrepreneur, chairman of BioAlps and director of the Campus Biotech site

Excellence in innovation is a starting point rather than an end goal.

For the third year in a row, Switzerland ranks atop the Global Innovation Index 2013. The GII is a report published every year by leading international business school INSEAD and the World Intellectual Property Organisation. It is only one of the many rankings that highlight the dynamic strength of Switzerland, which boasts some of the most brilliant research institutions. That’s all very well, you say, but what’s in it for us, the citizens?

More than statistics and the momentum from well-earned pride, what counts is translating this innovation into economic value and jobs. With the competition between regions and between countries, innovation plays a key role for at least two reasons. Innovation stimulates growth, and most of the companies that will be driving innovation over the next few decades simply do not exist today. In our globalised world, knowledge crosses borders in a simple click of a mouse. Ideas do not necessarily transform into economic value and jobs where they originated, but rather where the motivation and most favourable conditions are found to realise them.

Our Helvetic Confederation has understood the role of innovation as a driving force and the need to support it. Whether they are at the federal, cantonal or regional level, or are topic-focused or cross-sector, countless initiatives and programmes have been set up to support innovation and strengthen the economic fabric.

Are the systems efficient? Judging from the current rankings, apparently so!

However, if we listen to our entrepreneurs and project ourselves into a scenario of restricted resources, this cohabitation will have to evolve into coordinated efforts that rigorously promote synergies, streamline performance and clarify offers, which will benefit both backers and entrepreneurs.

Our Confederation, made up of organisations that take pride in their independence, will then become a Republic. This more centralised Republic of innovation*, while listening to and serving entrepreneurs, can promote the synergies between these organisations and break down the barriers that stand in the way of innovation.

Although the mindset is changing, the ambitions remain to make sure that this new Republic maintains its leadership in innovation and guarantees its prosperity in an increasingly competitive world... focusing on the fundamentals: creating the optimal environment for the exceptional people who will be the cornerstone of our academic, industrial and entrepreneurial strength. ⁄

FOR MORE INFORMATION

www.bioalps.org the platform for life sciences in Western Switzerland

DR

* To stay informed about life sciences and innovation in Western Switzerland, visit www.republic-of-innovation.ch

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in SITU

world

in situ

AROUND THE WORLD Because research knows no borders, In Vivo provides information on the latest medical innovations around the world.

The percentage recovery rate promised by Sovaldi.

The drug, used to treat hepatitis C, was approved to go on the market by the European Commission in January 2014.

Smart robots NURSING CARE Robots, like the famous da Vinci, have been assisting surgeons for a few years. Now it’s time for nurses to get support from these machines. Hospi (picture below), developed by Panasonic, is already being used in Japanese hospitals.

At 1.30 metres tall, Hospi washes patients’ hair and fetches medicine. California company Veebot is preparing to launch the Veebot Robotic Phlebotomist, a robot that can draw blood using a combination of ultrasound, laser and infrared-camera technology.

“An artificial heart will be on the market within two to five years.”

Jean-Claude Cadudal, president of Carmat, the company that has created an autonomous artificial heart. The first transplant took place in December 2013.

the device

NANOSTIM A revolutionary, leadless pacemaker the size of a one euro coin. The device fits entirely inside the ventricle using a catheter introduced into the femoral vein. No surgical intervention is required.

Nanostim, developed by the US company St. Jude Medical, was implanted for the first time in France in December 2013.

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world

Clin.univ.St-luc / H. Depasse

in situ

Creating bone from fat STEM CELLS Scientists at Saint-Luc University Clinic Hospital (UCL) in Brussels have recently developed a technique to create artificial bone tissue from stem cells taken from the patient’s fat. The stem cells are grown and reproduced three months before being re-implanted where the patient’s bone is missing. Professor Denis Dufrane, coordinator of the Centre for Tissue and Cellular Therapy at UCL explains why this discovery offers so many advantages. “Currently, we transplant bone tissue from donors and set it with metal plates, meaning that there is a very high risk of fracture.”

ivo in v picks t bes Alors voilà, les 1001 vies des urgences

What doctors can learn from each other

Your brain on video games

Daniel E. Lieberman, Pantheon Books, October 2013

Baptiste Beaulieu, Fayard, October 2013

Talk by Stefan Larsson at the TED Conference

Talk by Daphné Bavelier at the TEDx Conference

Professor of Human Evolutionary Biology at Harvard University, Daniel Lieberman describes the evolution of the human body from “How We Became Bipeds” to “Why Everyday Innovations Can Damage Us”. The author examines both the benefits of these changes and their negative effects, such as the growing incidence of diseases like obesity.

Lieberman argues that we are not adapted to modern lifestyles, urging us to take up habits like running barefoot.

Baptiste Beaulieu’s successful blog “Alors voilà”, launched in November 2012, has now been adapted into a book. The young doctor details his experiences in the emergency room at the hospital in Auch, in France’s Gers department. His stories, told with humour and sensitivity, immerse the reader in the challenging but deeply human day-to-day life of healthcare providers and give glimpses of the relations between doctors and nurses, home visits and the incredible dealings with patients.

The Story of the Human Body

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This talk given in October 2013 by Stefan Larsson, a management consultant from Boston Consulting Group, provides an interesting complement to the special feature on participatory medicine in this issue of In Vivo (p. 19). His message is that transparency and data sharing between hospitals can optimise the efficiency and cost of healthcare.

s on video OM AZINE.C links to OMAG IV V .IN WWW

Filmed back in June 2012, this talk given by Daphné Bavelier from the University of Geneva and the University of Rochester (New York) created a buzz, exceeding 1.5 million views a few weeks ago. The scientist focused on the ultra-famous first-person shooter video games (e.g. “Call of Duty”) and made some surprising discoveries about how these games can help us learn, concentrate and, fascinatingly, multi-task.

in SITU

Ethics and the bionic man Rex (right) is the first bionic man.

He is the model of everything that science can do today in terms of synthetic organs and robotic prostheses. Rex is entirely artificial: limbs, blood circulation, blood, pancreas, kidneys, gall bladder, heart and trachea.

Here, he is posing next to Bertold Meyer, a psychologist from the University of Zurich whose face was used as a model to create Rex. Presented for the first time in London in 2013, the bionic man represents scientific progress and also illustrates the many important ethical issues, such as cost management and the limits of these technologies. Only the wealthiest patients will likely have access to these devices in the future due to their high cost.

Today, the use of these technologies is accepted as a means of replacing a function damaged by disease or an accident, but will they one day be used to improve or even boost certain capabilities? These are questions that healthcare professionals, politicians and ethics experts need to ask.

AFP PHOTO / ANDREW COWIE

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world

in situ

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world

participatory medicine

BIG DATA

Patients show it all /

Disclosing your data helps improve treatment and opens up new opportunities for research.

Welcome to the fast-growing world of participatory medicine.

/ BY

Benjamin Keller, Melinda Marchese AND Julie Zaugg

www.facelab.org

Average faces calculated for In Vivo

by The Face Research Lab

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focus

participatory medicine

M

edicine has always been about data.

More or less structured information – on symptoms, temperature, heart rate, medical records, test results, etc. – has been used by practitioners for centuries to diagnose ills and prescribe treatment. This age-old practice has exploded in the past ten years. Medical data has gone digital, growing exponentially and flowing endlessly. The phenomenon is opening up new opportunities for researchers and transforming the doctor-patient relationship.

“The storage capacity and powerful calculation abilities of computers are completely revolutionising the way we do research,” says geneticist Jacques Fellay, laboratory director at the School of Life Sciences at the Swiss Federal Institute of Technology in Lausanne (EFPL). “Today, we can work with a virtually infinite amount of medical data from ‘real’ patients from a broad range of backgrounds. Until now, we had to study limited groups of people willing to participate in clinical trials.”

Healthcare professionals are not always the ones collecting these vast amounts of data. A number of social media sites focused on diseases have cropped up, some of which were even created by pa-

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tients themselves. All the information they publish is compiled and can therefore be used to build a collective, documented knowledge base of chronic diseases that are sometimes rare and relatively unknown (see point 1 below).

Other types of data come from electronic patient files, a public service available in a number of countries, including Switzerland (see point 2, p. 24). Furthermore, biobanks are being set up worldwide by healthcare institutions to pool collections of biological samples (see point 3, p. 24).

FACTS and figures

Big Data

The enormous volume of digital data generated by individuals. Every day, it grows by 2.5 trillion data bytes, according to IBM. /

12.4

In billions of dollars. The turnover of the Big Data market in 2014 (all fields combined), according to Transparency Market Research. /

300

In billions of dollars. The potential savings to the American health system, thanks to Big Data applications, according to McKinsey.

However they do it, patients are sharing their personal data – on blood, tissue or results from clinical tests – voluntarily. A growing number of them have a desire to contribute to science. “This trend doesn’t necessarily mean that people trust research more today than they used to,” says Jacques Fellay.

“Ten years ago, we simply didn’t have the technology to harvest and store such large amounts of data.

If scientists explain their intentions to patients correctly, and if they can work together in an ethically sound environment, then participatory medicine has a bright future ahead. More importantly, it will open up extraordinary therapeutic prospects for a number of diseases.”

Social media – Patients working together

/////////////////////////////////////////////////

In September 2012, Italian Salvatore Iaconesi, who had been diagnosed with a brain tumour, decided to put all of his medical data online, inviting visitors to his website “La Cura” to help him find a cure. He received more than 500,000 responses offering advice, even from doctors.

After his operation, he thanked the entire support community for “being there” for him.

Like Salvatore Iaconesi, thousands of people across the world now share their medical records on internet platforms designed specifically for this purpose, such as CureTogether and Carenity. One of the most popular 20

is PatientsLikeMe, a social media site set up in the United States in 2005. People can register and create a profile with a username. This sort of Facebook for sick people has 250,000 members, 153 of whom are from Switzerland. Patients describe their symptoms and compare diagnoses and side effects.

What is the point of sharing such personal information online? The main reason is to find a cure for a disease. “We compile our members’ data into charts and tables, so they can compare themselves with other people suffering from the same disease, see what medications work best for them, learn about the side effects of different treatments or get advice about how

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“The patient has changed the doctor’s role”

Sociologist Alain Kaufmann believes that the paternalistic doctor-patient model is being challenged. based on an interview

Patrick dutoit

with bartek Mudrecki

How have social media sites like PatientsLikeMe changed patients’ roles in their own care? ak Sharing data on this type of platform has given patients power, as they can now tap into the collective knowledge about their pathology. This empowerment has altered the doctorpatient relationship, challenging the “paternalistic” medical model.

Expertise is more evenly distributed between the doctor and patient, with a balance of power coming into play. The person being treated becomes a partner, a co-therapist who acts as an “amateur professional”.

The doctor’s role remains essential but is now integrated into a new spirit of dialogue.

Self-managed production and medical data sharing suggest that medical expertise is not entirely trusted. This phenomenon also indicates the patient’s need for independence, in line with the contemporary liberal view. But this form of independence includes a principle of solidarity in a concerned group of people who want to produce collective knowledge. This involves the ideal of cybernetics and the “beehive brain”, in which everyone contributes information so that all citizens can benefit from it.

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ak

Does that mean people don’t trust their doctor anymore?

Why do patients share confidential information online? ak That’s the whole paradox.

On one hand, individuals want to protect their medical data.

On the other, when you put your

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genomic data online, for example, you can be easily identified. It’s the most reliable way of finding someone’s identity.

Except that patients take this risk, despite warnings from experts, because they want to contribute to increasing collective intelligence. They have more to gain than to lose. In return, they have access to a database of knowledge about their illness as experienced by others. This shared knowledge also gives statistical meaning to alternative treatments, sometimes favouring them over traditional pharmacological treatments.

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Alain Kaufmann is director of the Science-Society Interface at the University of Lausanne.

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PATIENTSLIKEME, SOCIAL NETWORKING FOR SICK PEOPLE Founded in 2004 in the United States, PatientsLikeMe has become the largest website for patients to share information about their disease, treatment and experience.

252,206

Number of patients

60% women

40% men

TOP 10 CONDITIONS Number of patients

Parkinson’s Disease 8,039

Fibromyalgia 31,958

Type 2 Diabetes 9,864

Amyotrophic Lateral Sclerosis 6,332

Epilepsy 7,506

Major Depressive Disorder 5,401

Systemic Rheumatoid Lupus Arthritis Erythematosus 4,656 3,687 Psoriasis 3,523

Multiple Sclerosis 32,474

Fatigue 85,269 Depressed mood 84,296 Anxious mood 84,097 Pain 82,189

Insomnia 72,246

SELLING DATA Examples of pharmaceutical companies collaborating with PatientsLikeMe

Headaches 37,962 Brain fog 37,767

Novartis Merck Sanofi

Somnolence 28,150 Stiffness/Spasticity 27,334

Abbott Labs Boehringer Ingelheim

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Balance problems 25,174

Number of scientific studies based on data from PatientsLikeMe

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Source: PatientsLikeMe, 28 January 2014 / Infographics: Benjamin Schulte

TOP 10 SYMPTOMS Number of patients

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to manage their symptoms,” explains Paul Wicks, VP of Innovation at PatientsLikeMe. Geneticist Jacques Fellay believes that “people also want to find purpose in the difficult experience they’re going through and make it useful for others.”

Patients take control

Some will go so far as changing the treatment prescribed by their doctor. For example, an American patient with multiple sclerosis found out on PatientsLikeMe that he was taking a smaller amount of one of his medications, Baclofen, than the other site users.

“By increasing the prescribed dose, he gained one hour of mobility per day,” says Paul Wicks. Another patient cured her epilepsy by having a brain operation that she learned about on PatientsLikeMe. Foreseeable risks

Some science experts have expressed reservations about the genuine usefulness of this data shared online by patients. “The quality of the data depends on the person’s understanding of their own state of health, which may be flawed,” stresses Pierre Théraulaz, member of the Vaud Patient Claim Review Commission. “A person may not agree with their diagnosis or may not accurately report their symptoms, or they may exaggerate the side effects of a medication. There needs to be an outside expert opinion.”

Another cause for concern is the impact that the online sharing of such vast quantities of medical data will have on confidentiality. On PatientsLikeMe, people don’t think twice about using their real names, sharing pictures of themselves and indicating their home town. Participants in the Personal Genome Project actually have to sign a consent form that states that the data they provide could be stolen or decrypted (see interview on p. 28). When someone shares information about their health online, they expose themselves to the risk that an employer 23

gilles weber

Patients now go online to find out more information about their health, taking on a whole new role in their care. No longer passive subjects dependent exclusively on their doctor’s expertise and recommendations, they seek information from other “informed patients”.

This builds their confidence. “Patients often come in for a visit with pages printed from Wikipedia,” says Chin Eap, member of the Unit of Pharmacogenetics and Clinical Psychopharmacology at the Lausanne University Hospital (CHUV). “There are positive aspects of this change that benefit doctors. Patients pay closer attention to their symptoms and can describe them better.”

“I’M GETTING INVOLVED FOR FUTURE GENERATIONS” André Charette was hospitalised in November 2012 and agreed to provide a sample of his blood for research.

A

ndré Charette did not think twice.

The Institutional Biobank of Lausanne (BIL) asked him if he would agree to donate some of the blood taken during his operation to research. He accepted immediately. “If I can contribute to advances in research in one way or another, I’ll do it,” he says. “I also agreed to donate tissue samples.” This 42-year old father of two mainly hopes that advances in genomics will benefit future generations.

André Charette wants to be informed if any genetic abnormalities are detected in his DNA analysis. “My data is not completely anonymous, because researchers can trace them back to me,” he says. “But the BIL assured me that my genetic information would only be used for medical research. I trustingly signed the general consent.”

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might refuse to hire them or that an insurance company might not provide them coverage.

care physicians or in caring for patients with a complex medical history.”

Patients also lose control over what is done with their data. PatientsLikeMe sells information about its members to pharmaceutical companies such as Novartis. CureTogether even allows pharmaceutical groups to send advertising to its members. “These online patient organisations have played a key role in developing participatory medicine, and their benefits are undeniable,” says Jacques Fellay. “But it is time to think about ways of guaranteeing protection for the individual.”

Despite needed improvements, such as allowing patients to enter data themselves, the Geneva platform remains the most advanced of its kind in the country.

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Electronic records – improving information exchange ///////////////////////////////

Data is also going digital at the individual level. Electronic records pool all of the information on an individual’s health, currently dispersed among numerous sources, and make this information available at any time from any device with internet connection. The purpose of electronic records is to reduce processing errors, provide faster care and avoid unnecessarily repeating tests.

Switzerland wants to encourage the creation of electronic records. A proposed federal law was drafted to define a legal framework, which could be passed in 2015. It would include certain incentives, namely financial. “The plan is not to create a federal platform, but to set up decentralised structures that can be limited to canton borders or extend beyond them,” says Daniel Dauwalder, spokesperson for the Swiss Federal Office of Public Health.

Other countries have taken things further. In Denmark, a nationwide platform was set up providing access to patients’ electronic records, medical information and information on the healthcare system.

The website is called Sundhed, and it is a big success.

Managing Director Morten Elbæk Petersen (read his interview at www.invivomagazine.com) pointed out that, at the end of 2013, the site was recording more than one million unique visitors per month in a country with a population of just 5.6 million.

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Biobanks – Gold mines for researchers

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Computerised medical records are already a reality in some Swiss cantons. Geneva was a pioneer of the movement that was deployed across the entire canton in May 2013. Patients who want their records computerised must file a request with a healthcare professional. As of January 2014, nearly 1,600 people had already made the switch. The file takes a few hours to create and is then connected with an insurance number, with some pre-existing information automatically inserted. Both doctors and patients can then view the records via an online platform (www.mondossiermedical.ch). “The patients decide who has access to what information,” says Adrien Bron, head of Geneva’s General Directorate for Healthcare (Direction générale de la santé).

Electronic records do not replace existing medical records. “Any information they contain is considered a bonus, but there is no guarantee that it is complete,” warns Adrien Bron. “Healthcare professionals are not required to include the information from their own records. The more electronic records are used, the more effective they will become, especially for primary 24

Ever bigger, ever more of them.

Biobanks – repositories of biological samples (blood, tissue, urine) used in research – have been growing recently thanks to advances made in genomics. Also referred to as personalised medicine, this approach aims to treat each patient based on his or her specific genetic make-up.

It is used to develop targeted treatments and prevent disease. The problem is that most of these genetic variations only concern a fraction of the population.

To detect them, researchers have to study a large number of DNA samples. That is where biobanks come in.

In Lausanne, a unique project in Europe to create a systematic hospital biobank based on the participation of all patients was launched in early 2013. The Institutional Biobank of Lausanne (BIL) aims to stay a step ahead of the rapid advances in genomics research. Patients can donate a few millilitres of

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Florence Nightingale, a pioneer in data management

Millbourn, Wellcome Library, London, www.royal.gov

At the end of the 19th century, this nurse forever changed the history of medical care by analysing data from her patients.

“The only English patients I have ever known refuse tea, have been typhus cases; and the first sign of their getting better was their craving again for tea.”

Florence Nightingale paid close attention to these little signs, described in her book Notes on Nursing. This British nurse, who lived from 1820 to 1910, practised in her lifetime what the 21st century refers to as data management: harvesting and

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studying patient data to improve the quality of care.

She was also a statistician, who served at the military hospital in Scutari (now the Üsküdar district of Istanbul) during the Crimean War (1853 to 1856). Faced with horrendous sanitary conditions and poorly kept medical records, she organised records, collected and analysed data. Her painstaking work reduced the death rate at hospitals during the war from 42% to 2%.

After her return to England, with the support of Queen Victoria, she continued her work analysing data

by leading the Royal Commission on the Health of the Army. She drew important conclusions on soldiers’ causes of death. To make sure that the statistics could be understood by members of Parliament and that measures would be taken, she presented them in the form of charts (see above).

Florence Nightingale’s dedication and meticulous data analysis led to major reforms. The “Lady with the Lamp”, referring to her night-time rounds visiting patients, is now widely considered to be the founder of epidemiology (the study of health and disease conditions of populations) and of modern nursing.

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Pharmaceuticals: The Battle Over Transparency Has Begun While medical data is becoming more readily available for research, the results of clinical trials conducted by pharmaceutical companies often remain unpublished. Researchers have launched an international campaign to demand transparency. text: daniel saraga

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hat could be nobler than helping research advance? Every year, thousands of Swiss people participate in the some 200 clinical trials organised to objectively judge the effectiveness of a medicine.

Participants can hope to benefit from it one day (if they suffer from the disease) or at least contribute to medical progress.

Alas, these efforts are often in vain. Many results from clinical trials are never published, a serious issue. Half of these studies are never made public, according to Carl Heneghan, professor of Evidence-Based Medicine at Oxford University.

He identifies the underlying problem: “It is impossible to determine the effectiveness of a therapy unless all of the results of clinical trials, without exception, are published.”

Bernard Burnand, director of the Clinical Epidemiology Centre at the Lausanne University Hospital (CHUV), says, “It’s a real ethical issue for the participants, who believe they are contributing to research. In actual fact, these people are being deceived.”

Cheating at heads or tails The negative results mainly

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remain hidden, which overstates the value of the therapy tested.

It is like flipping a coin and letting all the “tails” be ignored so that we can assert that we have an extraordinary coin that most often falls on the “heads” side. It is cheating, of course, but it is common practice in the medical field.

The consequences can be fatal.

Published in the “New England Journal of Medicine” in 2000 and sponsored by the pharmaceutical company Merck, the main study on the toxicity of the anti-inflammatory drug Vioxx did not mention all the cardiovascular problems observed during the clinical trials. It took four years for Vioxx to be withdrawn from the market, after being taken by tens of millions of patients. According to a study by “The Lancet” published in late 2004, Vioxx was already responsible for some 38,000 fatal heart attacks by the time it was taken off the market.

The opaqueness surrounding clinical trials may come across as an outrage, but the pharmaceutical industry continues to defend it tooth and nail, generally justifying it to protect their industrial secrets. Despite our repeated requests, Interpharma

(the organisation that represents pharmaceutical companies involved in research in Switzerland) was unavailable for a statement.

Doctors strike back The situation could change.

In January 2012, Carl Heneghan and dozens of doctors (including British psychiatrist Ben Goldacre, author of “Bad Pharma”) launched AllTrials. This international campaign aims to convince public opinion, politicians and patient organisations of the need for a “paradigm shift”. The charter was signed by 420 organisations, only two of which were pharmaceutical companies.

One of these was UK giant GlaxoSmithKline, which put its words into action by delivering researchers with the full summary of studies on the influenza inhibitor Relenza.

Another small victory was with Roche (which did not join the AllTrials campaign). After years of avoiding requests for access to data, Roche formed an expert panel to analyse all the clinical trials on Tamiflu, a drug whose effectiveness has been seriously challenged. The data has also been released to researchers from the Cochrane

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Collaboration, albeit in an impractical format. “We did not receive an electronic database, but PDF files,” says Peter Doshi of Johns Hopkins University in Baltimore.

Specialists are happy to see this shift but remain cautious.

“The fight is definitely not over,” says Bernard Burnand, who has been involved since 2005 in the Ottawa Group, an organisation that supports the registration of clinical trials and the release of results.

“We are waiting for tangible facts, not promises.”

One highlight is from the European Medicines Agency (EMA), which decided to publish full summaries of clinical trials data as of January 2014. But this openness can be met with legal action from pharmaceutical companies. In November 2013, InterMune and AbbVie managed to block the EMA’s publication of data. And the movement has not begun in Switzerland, where the regulator Swissmedic stated that it has no intention of publishing the results of studies.

Now we have to deal with the thousands of clinical trials that have already been conducted.

They are tucked away in archives, far from those who have the most to gain or lose, i.e. doctors and patients. “In two decades, people will look back on this period in amazement, when data were not published,” says Carl Heneghan.

“They’ll see it as incredible and preposterous.”

For more information

“Bad Pharma”, Ben Goldacre, Fourth Estate, 2012

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blood, which is then stored and used by researchers.

“Of the 8,500 patients met prior to January, 7,500 agreed to contribute,” says Vincent Mooser, director of the BIL. “We inform participants if we discover a gene mutation that would increase their predisposition to a disease.” The only exceptions are diseases for which there is no treatment.

There are safeguards. “Under federal law on human research, we must obtain written consent if we want to use someone’s medical data.” And firms have to inform federal data protection officials when they harvest patient information. Each canton also has an ethics commission that monitors this research.

However, there is no international framework.

“We have to prove to patients that they can trust us when they agree to participate by offering their samples and data,” says Jacques Fellay. “Researchers do this by showing their transparency and by keeping patients well-informed of their progress on research projects.”

Other big biobanks have been set up throughout the world, such as the National Biobank of Korea, the paediatric biobank at the Children’s Hospital of Philadelphia and the UK Biobank. A number of smaller biobanks have also been created by hospitals for targeted research. ⁄

A medical vault

In July 2012, a group of Swiss academics and doctors founded the Health and Data Association to encourage dialogue on scientific, ethical, social, legal and political issues involved in the use of personal data. The organisation plans to create an online platform where patients can store all sorts of health data. “They can compile information on themselves, like their medical record or information they have collected on their own, like the hours of sleep they get or their eating habits,” says Ernst Hafen, the association’s co-founder. “Only patients will have an overview of their file. They will be free to choose what information they want to make available to researchers.” These data will be sold to pharmaceutical companies and other research institutions. The platform is still under construction and is managed like a cooperative. “Our goal is to help members benefit from the knowledge and profits that will come from the platform.”

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INTERVIEW “These data only have value when pooled together”

based on an interview with

Julie Zaugg

Geneticist George Church is behind one of the most ambitious scientific projects ever undertaken: human genome sequencing.

He explains the benefits of this type of participatory research project.

in vivo What has the Human Genome Project – a scientific feat in itself, completed in 2003 – accomplished?

george church It gave us a reference genome.

But in retrospect, that’s not what we needed.

We needed vast quantities of genetic profiles to compare them and study how they interact with the environment of different people.

That’s the goal of the Personal Genome Project, launched in 2004.

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Tell us about that project...

This database, begun in Boston, is the only one of its kind in the world. Today it contains the genetic profiles of 3,000 people from four different countries. Two hundred of them have delivered complete genome sequences. But we expect this number to increase rapidly with the spectacular drop in the cost of genetic sequencing (editor’s note: less than 1,000 Swiss francs). Anyone can participate. All you need to do is submit DNA samples, ideally along with your medical record, which contains information on your environmental traits. All this information is then put on an open platform that can be accessed by researchers worldwide.

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What are they going to do with all that information?

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Medically, the main goal is to develop procedures to advise and monitor patients that carry a certain gene mutation that could increase their predisposition to a serious disease, like Tay-Sachs (editor’s note: a neurodegenerative disorder) or certain types of breast cancer. It can take different forms. For example, we can study the probable effects of one person having a child with another given person, recommend tests when the baby is born and determine what foods to proscribe. Or, we can advise someone to have

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preventive surgery to remove certain tissue or begin taking one aspirin a day.

And what purpose will this huge amount of data serve for research?

iv

It can be used to study the development of genetic diseases and understand them better.

We have developed a new technique called CRISPR, where a mutation – once it has been identified as the probable cause of a disease – is introduced into the DNA of a small clump of human cells called an organoid. We can then study its effects on the cells to gain a better understanding of the disease.

In other words, we’re going from simply noting a correlation between mutation and disease to actually seeking a cause. The modified organoid can also be used to test different therapies.

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Will medications eventually be developed to specifically target these mutations?

iv

A pioneer in genomics American George Church, Professor of Genetics at Harvard Medical School, is recognised worldwide as a pioneer in genome sequencing. He began the Human Genome Project in 1990. Once this genetic inventory of humans was complete, George Church launched the Personal Genome Project. In early 2013, the genetic researcher made international headlines with another ambition: cloning a Neanderthal.

Of course. Over 2,000 gene therapies are currently being clinically tested.

Glybera (for patients with a gene mutation that makes them more susceptible to pancreatitis) has already been approved in Europe.

These gene therapies represent the pinnacle in personalised medicine. They modify the DNA within cells to make them more closely resemble a “healthy”, or even better-thannormal, person.

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SAM OGDEN / SCIENCE PHOTO LIBRARY

George Church heads the Personal Genome Project, a genetic profile database that is unique in the world.

What are the direct benefits for patients who donate their genetic data to the Personal Genome Project?

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We inform them if we find any indications in their genome that they have a predisposition to a certain disease. But you have to remember that only a small number of diseases can be predicted this way and, of those, only a smaller number still can be treated or prevented. Despite this low probability, it’s always worth it to participate in this type of exam. You never know what a gift contains until you open it.

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By agreeing to put all their data online, these people are basically giving up their right to medical secrecy, right?

iv

That’s one of the basic conditions of the Personal Genome Project. When they agree to give us their data, patients are aware that they can no longer control who has access to it or what is done with it. We make sure that they sign an open consent.

At the same time, we avoid making false promises.

If this data is stolen by a hacker, for example, it can very easily be decoded and its source identified.

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Isn’t that dangerous?

Today, nobody is completely protected from 29

this type of incident. Not long ago, the United States Department of Veterans Affairs lost the medical records of 26 million people. But laws are being passed to prevent discrimination by employers or insurers based on someone’s genetic data – like the law passed in the United States in 2008 – making the issue less sensitive.

Who keeps the data shared online through the Personal Genome Project?

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Participants can access their data at any time and ask for a copy. However, data is also made available to researchers worldwide, who can do what they want with the information without requesting authorisation. The data belongs to everyone.

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What is the value of this data? Shouldn’t people be paid for donating their genetic material?

iv

Some things only have value when they are pooled and shared freely. Just think about the information contained in the online encyclopaedia, Wikipedia. If we started paying for this information, there would be a huge number of pay-for-access databases, making sharing in this way impossible. ⁄

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“To reduce burnout on the part of healthcare professionals, and to keep the human in a profession that is all about humanity, it would be useful to provide the people concerned with the resources for developing the inner qualities they need to better care for others.”

Matthieu Ricard

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Léa Crespi / PASCO

mens sana

MENS SANA

INTERVIEW

Matthieu Ricard Altruism could regenerate the practice

of medicine. So says Matthieu Ricard, molecular genetics expert, Buddhist monk and the French interpreter of the Dalai Lama. interview: Paule Goumaz

“Healthcare professionals need to cultivate altruism” works focus on the “need to keep an emoThe latest book by the singular Matthieu Ricard, Advocacy tional distance with the ill” to avoid classic for Altruism, is the culmination of years of discussions with burnout. Then she said, “It's funny, I feel like scientists, philosophers and economists. Addressing today's I gain something from taking care of the suffinancial, social and environmental crises, the doctor in fering, but when I talk about that 'gain' with molecular genetics posits a new way of thinking whereby my colleagues, I feel a bit guilty about feeling each one of us is capable of – and stands to gain from – something positive.” In contrast to empathy facultivating altruistic love. tigue, love and compassion are positive states of mind that strengthen our inner capacity to cope IN VIVO In your book, you say that “altruism is not a with the suffering of others. luxury but a necessity.” So should we encourage the teaching of altruism? Matthieu Ricard It would seem natural to teach people whose work consists in helpIV What do you mean by “positive states of mind”? ing the suffering about altruistic love and compasMR I certainly don't mean that observers consider sufsion. The training would also help the loved ones, fering as acceptable. Instead, they react to suffering parents, children and partners of the ill and disathrough constructive mental states such as courage, bled who take care of them. motherly love, a feeling of connection, and the determination to find a way to help, rather than “negative” states of mind, which tend to lead to distress, aversion, IV Don't you think caregivers and doctors are discouragement and avoidance. selfless enough already? MR I once talked to a nurse who, like most of her colleagues, is continually confronted by the suffering and probIV What about healthcare professionals? MR The medical lems of her patients. She told me that the studies curriculum makes virtually no mention of the word new training courses for care staff where she “compassion” and has even less to say about how to cultivate

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INTERVIEW

But empathy in itself is not enough. If you it, despite the fact that kindness and compassion are an intelet yourself suffer from the suffering of the gral part of the ideal of medicine, the Hippocratic Oath and other, day after day, month after month, you the code of ethics. Medical students and young doctors startwill quickly fall prey to emotional exhausing out at hospitals are more often subjected to draconian tion and burnout. A study carried out in the workloads, often working 24 hours non-stop with patients.

United States showed that 60% of caregiving staff suffer or have suffered from burnout Obviously there are countless doctors, nurses and caregivers and that one-third of them are so affected that around the world who dedicate themselves tirelessly to the they have to temporarily stop work. wellbeing of others with admirable devotion. But to reduce burnout on the part of healthcare professionals, and to keep the human in a profession that is all about humanity, IV So empathy isn't always a virtuous thing? it would be useful to provide the people concerned with MR Depending on the circumstance and the inthe resources for developing the inner qualities they need dividual, empathy can be about concern and stir to better care for others. If caregivers were the desire to meet the needs of others, or it able to cultivate compassion and integrate it can trigger a distress that focuses our attenin current hospital practices, patients would Biography tion on ourselves and turns us away from feel better cared for and doctors and nurses Matthieu Ricard, the other. For this last reason, empathy born in France would gain more satisfaction from their alone is not enough to engender altruism. in 1946, is the work and a better emotional balance. son of JeanTechnology is playing an ever greater role in hospitals and care institutes.

Doesn't it create a distance between patient and caregiver? MR Machines in themselves can only be a good thing in that they help to better identify and treat illnesses.

Technology today can work wonders. But the use of high-performance instruments should naturally not relegate to the background the benevolent presence of doctors and caregiving staff that is essential for the patient.

IV

Your book also establishes a clear distinction between altruism and empathy.

MR Yes. Empathy should not be confused with altruistic love and compassion, which is the desire to remedy suffering and its causes. Empathy is a warning sign that informs us about other people's situation. It's an emotional resonance, whereby if the other is joyful, you feel that joy, and if the other is suffering, you are marked by that suffering. It's also a cognitive experience, one in which you imagine what the other is feeling or what you would feel in their place.

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François Revel, a philosopher, journalist and member of the Académie Française, and the painter Yahne Le Toumelin.

He completed his Ph.D. in Molecular Genetics at the Pasteur Institute under the direction of the Medicine Nobel Prize winner, François Jacob. Fascinated

by Tibetan Buddhism, he studied with renowned spiritual leaders and settled definitively in the Shechen monastery in Nepal, where he has now lived for 40 years.

He has been the French interpreter for the Dalai Lama since 1989 and has published numerous translations of Buddhist texts and books translated into more than 20 languages.

“Altruism is the common thread that will help us find our way in this labyrinth of serious and complex worries.”

How do we reach that state, then? MR There remains compassion, the essence of which is an altruistic motivation, necessary and sufficient to make us desire the good of others and give us the determination IV

MENS SANA

INTERVIEW

to make that happen through action. Compassion is being aware of the situation of the other, accompanied by the desire to relieve their suffering and bring them wellbeing. Last of all, it does not fall prey to confusion between the other person's emotions and our own.

“In contrast to empathy fatigue, love and compassion are positive states of mind that strengthen our inner IV Several studies, which you have taken part in, have scientifically demonstrated these capacity to cope differences. MR That's right. Tania Singer, with the suffering director of the Max Planck Neuroscience Institute in Leipzig, and her colleagues carried of others.” out a longitudinal study, a project called “ReSource”, aimed at training for one year a group of 400 volunteer novices on a range of emotional and cognitive abilities, mental abilities including empathy and compassion. A preliminary study already showed that for most people, the empathy felt in the face of the other person's suffering is systematically correlated with entirely negative feelings – pain, distress, worry, discouragement. The neural signature of empathy is similar to that of negative emotions.

While altruism is correlated with positive feelings? MR The initial results show that after one week of meditating on altruistic love and compassion, the participants reacted in a much more positive and caring way to video clips showing people suffering.

IV

Find out more

“Advocacy for Altruism”, Matthieu Ricard.

NiL Editions, 2013 “The Art of Meditation”, Matthieu Ricard.

NiL Editions, 2008 “The Quantum and the Lotus”, Matthieu Ricard and Trinh Xuan Thuan “Happiness: A Guide to Developing Life's Most Important Skill”, Matthieu Ricard, NiL Editions, 2003

family and social conditions, and many other aspects of their existence. In particular, we would do all we could to find a solution to the precarity that exists side by side with wealth.

IV You also condemn the excesses of free trade and favour an economy that is responsible to others. MR If investors had more consideration for the good of others, they would not gamble with the savings of people who placed their trust in them with the aim of reaping the highest dividends at the end of the year. They would not speculate on food, seeds, water and other resources that are vital to the survival of the poorest populations.

Look at the crisis! Isn't it an exacerbation of perIV Are there any other fields in which altruism could sonal interests, entirely self-absorbed? Wasn't it be beneficial? MR The environment is of particular contriggered by greediness, unchecked speculation cern for us, for our children and descendants, and for all and sub-prime manipulations? It all resulted beings, human and animal, now and in the future. Defrom the reductionist, dehumanised view of spite the complexities of the issue, it can be summed up human beings held by Homo economicus. in the opposition of selfishness and altruism. If we have Wouldn't it be better to foster the emergence any consideration for the lives of future generations, we – in ourselves and in society – of Homo altericannot wreak this much damage on the planet we are gocus, a person who builds their happiness with ing to leave to them. They will tell us, “You knew it but you other people in mind, based on solidarity and didn't do anything.” concern for others? Altruism is the common thread that will help us find our way in this Similarly, if we had more consideration for the quality of life labyrinth of serious and complex worries. / of those around us, we would seek to improve their work,

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INNOVATION

Telemedicine: going to great lengths Telemedicine has transformed healthcare by breaking down distance barriers. And the revolution has only just begun.

i

t’s 7 September 2001. A patient at Strasbourg University Hospitals has just undergone a successful gallbladder removal.

Though a common procedure, there was something strikingly different this time: the surgeon was over 6,000 kilometres away and performed the operation using a robot named Zeus. The “Lindbergh operation”, and others like it, helped propel

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Text: Jean-Christophe Piot ILLUSTRATION: joëlle flumet

medicine into a new era.

Fast-forward twelve years. Medical practices in all disciplines have changed radically worldwide, spurred by improvements in the mobility and computing power of telemedicine terminals and by the ready availability of high bandwidth. Doctors can use telemedicine for a host of functions, for instance to perform remote consultations, share

expertise with colleagues, and send and interpret a patient’s parameters. The technology has plenty of applications in various procedures and treatments, both routine and complex, from videoconferencing to robotic surgery.

Telemedicine technology also spares elderly and disabled patients from having to travel to see a doctor in person. “Patients are equipped with mobile devices that send information to healthcare professionals, who monitor their state,” says Alain Junger, head of IT systems in the Healthcare division at the Lausanne University Hospital (CHUV). “We can respond to their questions and concerns without their having to come to the hospital, and we can react

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INNOVATION

Thanks to telemedicine, elderly and disabled people are no longer required to leave the house: a practitioner monitors their progress by video conferencing.

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swiftly if need be.” In the same vein, the technology prevents patients who are recovering from an operation or long-term illness from having to make numerous exhausting – and expensive – trips back and forth.

Speedy high-tech reactions

“New technologies are having a huge impact on our daily lives, especially in nursing,” says Alain Junger. “The CHUV has lots of telenursing tools used to care for hospitalised patients.”

Doctors and nurses can now monitor screens that continuously display not only patients’ standard vitals, such as heart and respiratory rates and blood pressure, but also their oxygen saturation. The screens also show the patient’s position and whether he or she is moving.

These new tools allow doctors to react faster, which is especially critical in emergency medicine.

“The time window for treating a stroke is narrow,” says professor Mikael Mazighi of the Neurology Service at the Bichat hospital in Paris. “Once the first symptoms appear, we have only four-and-a-half hours to start intravenous thrombolysis. A stroke victim’s brain loses two million neurons each minute, so it is essential to act quickly and open the cerebral artery blocked by a clot.” The problem is that this procedure can only be prescribed by a neurologist.

Telemedicine saves precious minutes for people who live far from a stroke centre. The

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INNOVATION

A WINDFALL for emergency doctor contacts the neurologist, who examines the patient by camera, orders the clinical examination, reviews the CAT-scan or MRI and decides on the appropriate treatment, which is then administered on site.

Alain Junger sees limitless technical possibilities across the board. “The spread of high bandwidth and the development of nanotechnology are creating new possibilities by the day,” he says.

Cooperation between specialists

Andy Fischer, CEO of Medgate, Switzerland’s biggest telemedicine service, and president of the International Society for Telemedicine and eHealth, believes that closer cooperation between all those involved in treating patients – attending physicians, specialists and hospitals – could make remote consultation more efficient.

“When practitioners respond to a patient by phone, they must be able to refer him or her to a colleague or hospital, if necessary,” he says. “The transfer of the

Access to healthcare for people living in rural areas has improved in recent years thanks to new communications technology. In India, for example, people in rural areas can now receive a drug from the pharmacy by showing the prescription sent as an SMS by their free telemedicine centre. Two thousand people in Mali received a remotely interpreted ultrasound in 2012, and more than a thousand received an electrocardiogram under similar conditions.

The Terres des Hommes Foundation launched a telemedicine project in Burkina Faso in early 2014 with the support of the Bill & Melinda Gates Foundation. “In rural parts of the country, one in eight children doesn’t reach the age of five. That’s mainly due to misdiagnosis, says Thierry Agagliate, who heads the project for the Swiss NGO. Nurses in 400 rural health centres will have access to the latest-generation tablets, allowing them to be connected in real time with doctors at the hospital in their area. In addition, the hospitals will be able to access the electronic files of the patients at the rural health centres and detect epidemiological trends to better understand the difficulties they encounter.”

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INNOVATION

HEALTHCARE WASTELANDS 1

standardise clinical communication.” In addition to 1,000 doctors and 15 clinics, Medgate also integrated a new category of partner into its Medgate Partner network last year: pharmacists.

“At 200 different Swiss pharmacies, patients can now receive a remote consultation from one of our doctors,” says Andy Fischer. “The goal is always to simplify access to healthcare as much as possible.”

RAFT

Fear of losing the human element

Narayana Health

2

1 In Mali in 2012, 2,000 people benefited from scans that were interpreted remotely. The procedures were led by RAFT, the Telemedicine Network for Francophone Africa, developed by Geneva University Hospitals (HUG).

2

In India, the Narayana Hrudayalaya Foundation has launched a vast telemedicine project enabling people who live far from medical centres to benefit from a consultation while staying at home.

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digital data collected during the teleconsultation needs to be simple.”

Efficient collaboration also requires harmonising the languages used in e-communications. “Given the sheer volume of data sent and interpreted, a common terminology is needed,” says Alain Junger. “We need to

Though telemedicine is inspiring much enthusiasm, there is also some cause for concern. One reason is the absence of physical contact. For many patients, the actual presence of a practitioner is crucial to any treatment process. All practitioners know the importance of the body language and mood of a person in consultation. Not even the highest-performance digital tool in the world can convey the feel of a treatment room, the stress of the patient or the sense of what is happening off-camera.

“Telemedicine does not make the doctor-patient relationship obsolete,” says Alain Junger.

“It’s not the computer or the screen that are treating the patient. These tools are a reassuring aid in many cases.

The sensitivity and intelligence of both caregiver and patient are just as critical today as they always have been. Screen or no screen, it’s still two human beings face to face.” ⁄

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prospecting

Giving blood: Overly Strict Standards Threaten Supply

Thousands of potential donors in Switzerland cannot give blood.

Now faced with a potential shortage, specialists are questioning certain exclusionary measures.

Text: cĂŠline bilardo

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“e

very year Switzerland fears a blood shortage,” says Rudolf Schwabe, director of the Swiss Red Cross’s (CRS) Blood Transfusion Service. His message is clear. Overall the country is self-sufficient, but several cantons such as Geneva, Basel and Vaud regularly have to call upon other Swiss transfusion centres to obtain a sufficient amount of blood bags.

“We import 10% of our requirements every year, i.e. about 3,000 bags of the 30,000 required in the Vaud canton,” says Jean-Daniel Tissot, chief of the Blood Transfusion Centre at the Lausanne University Hospital (CHUV). “And these requirements are increasing with new technological advances in medical care, which are making it possible to treat older patients.”

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prospecting

Red blood cells, platelets and plasma are drawn when a donor gives blood. These three components are used mainly by doctors from onco-haematology and transfusion surgery services.

“Unfortunately when we call for blood donations, we are sending a contradictory message,” continues Jean-Daniel Tissot.

“We are looking for more and more donors, and at the same time we are refusing more and more volunteers, since the precautionary measures are so restrictive.” To be able to give blood, volunteers must meet very precise criteria. Those who do not meet the criteria may be excluded from giving blood temporarily, or even definitively.

Below is an overview of the main obstacles to giving blood.

1.

Alternative solutions 1. Purify the blood Switzerland is a pioneer in the “pathogen inactivation” procedure, which consists of destroying all the bacteria that might be present in the blood, thus ensuring a more pure blood. This technique is already carried out on platelets and plasma, two blood components which permit coagulation. And research is in progress for the total elimination of these harmful agents in red cells.

“Once we’re able to destroy pathogens in red cells too, infection risks will be under control,” says Jean-Daniel Tissot. “All the restriction criteria will have to be revised.”

Homosexuality

Men who have had sexual relations with partners of the same sex any time after 1977 – when the first human retrovirus linked to AIDS was discovered – are excluded from giving blood for life, as are people who take drugs or engage in commercial sex acts. “It has been shown that, every eight years, one bag in three million is contaminated,” says Emmanuel Rigal, chief of the Blood Transfusion Centre at the Geneva University Hospitals (HUG) in Geneva. “By relaxing this measure, the risk incurred would be an additional three to four people contaminated per year in Europe. In relative terms,

2. Produce artificial blood To date there is still no blood substitute, and the research being conducted on the manufacture of synthetic blood has for the moment been interrupted following health complications, such as increased risk of infarction, as shown by a study published in the Journal of the American Medical Association in 2008.

On the other hand, the development of red cells from embryonic stem cells is close to becoming a reality.

Professor Luc Douay, chief of the Haematology Service at Hôpital Saint-Antoine in Paris, conducted a first successful clinical study in 2011 and is pinning his hopes on a new cell discovered in 2007 called the “induced

that’s still very low. But what is society’s threshold of acceptability for the additional risk, even minimal, of HIV transmission?

It’s more a social issue than a medical one.” According to Jean-Daniel Tissot, “no one has the courage to make this decision, but the discussion will resume as new medical techniques are studied” (see blue box on p. 39). Moreover, in 2012, the Swissmedic supervisory authority refused to get involved after a year of Parliamentary debate on this precautionary measure. “Any ascertained, or even suspected, risk for recipients must be avoided,” says Hans-Beat Jenny, Swissmedic’s deputy director.

2.

Change of sexual partner

The period of time a person must wait, after changing partners, before they are allowed to give blood was previously set at 12 months. In January 2012, the period was reduced to four months. But for the chief of transfusions at the CHUV, this criterion may be reconsidered, especially bearing in mind protected sex and the value of tests that can offset the risk of infection: “With this measure, we’re forced to refuse no less than 30 to 40% of young donors.” At the CRS, Rudolf Schwabe also objects to this restriction: “The population of young donors is large, so we are hoping to reduce this waiting period to three months.”

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3.

prospection

Trips abroad

Malaria, chikungunya and chagas are emerging viral and parasiteborne diseases which temporarily prevent donors from giving blood in Switzerland. But there is no prospect of this principle being called into question. “The risk of transmission of an unknown pathogen is still too high,” says Jean-Daniel Tissot. In 2013, it was West Nile fever that paralysed blood donation centres: travellers returning from the United States and Canada, among others, had to observe one month’s quarantine. This phenomenon affects Geneva in particular, where the population is very mobile – Geneva is among the cantons most affected by blood shortages.

4.

Creutzfeldt-Jakob disease

Any individual who spent at least six months in England between 1980 and 1996 is not permitted to give blood.

Creutzfeldt-Jakob disease, a virus which appeared during this period in Great Britain, has a very long incubation period, and tests are not always able to detect it. In 2004, a variant of this disease, “mad cow disease”, banned anyone who received a blood transfusion after 1980 from giving blood. “Because of this measure, we lost 11% of our most loyal donors,” says Jean-Daniel Tissot. “This rule

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should be re-examined or even abolished. As for CreutzfeldtJakob disease, no case has been observed in Switzerland, and the measure is no longer relevant.”

5.

Age and weight of the donor

While the minimum age for giving blood in the US is 16, donors must be at least 18 years old in Switzerland. This measure is accepted by specialists, who cite medicolegal reasons and the need to allow patients time to grow up. As regards the

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prospection

Jean-Daniel Tissot, chief of the Blood Transfusion Centre at the Lausanne University Hospital, believes that some criteria for blood donations should be reviewed.

pluripotent” cell, which can produce an unlimited number of red cells (see article on stem cells p. 64).

“The greatest challenge is adapting laboratory culture conditions to production on an industrial scale,” he says. “I hope to see the first results within four years.”

3. Reduce blood transfusions

minimum weight of 50 kilos, there should be no change there either. “We draw 450 ml of blood, which is quite a bit as concerns the donor’s health,” says Jean-Daniel Tissot. “And if we drew less blood from a person weighing under 50 kilos, the quality of the blood would no longer be optimum.”

6.

Donation frequency

In Switzerland, female volunteers can give blood at most twice a year, while males can give up to three times (compared with four

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and six times respectively in France). “Drawing more blood would expose donors to risks and reduce their iron reserves, causing anaemia and chronic fatigue, especially in women,” says Emmanuel Rigal, who considers the rule satisfactory.

Jean-Daniel Tissot finds even this criterion to be excessively permissive: “We already draw too much blood from the same people in Switzerland. I would prefer increasing the number of donors by one and a half times and decreasing the number of donations from each volunteer by one and a half times.” ⁄

Though giving blood will always be necessary in cases of blood-loss emergencies, blood transfusions are not indispensable in all situations. “By conducting work upstream in hospital services, the need for blood donations can be reduced by at least half,” says Donat Spahn, chief of the Anaesthesiology Service at Zurich University Hospital.

He thought up a concept called “Patient Blood Management”, which has three objectives: to increase medical examinations of patients and treat them for any possible anaemia before hospitalisation; to reduce blood loss during an operation by reviewing certain surgical techniques; and finally to forestall the need for post-operative transfusion by treating patients with sufficient iron and erythropoietin, a hormone that boosts red cell production. A pilot programme has already been set up in Australia for orthopaedic surgery.

Text Stanislas Cavalier

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trends

When medicine goes too far

Some screenings detect anomalies which have no impact on a patient’s well-being. Such over-diagnosis can create significant economic and health consequences.

“A

healthy man is just a sick man who doesn’t know it,” wrote Jules Romains in his play Dr Knock, or the Triumph of Medicine (1923). Nowadays, “a person in good health is above all someone who has not yet undergone screening,” jokes Sauveur Boukris, general practitioner and author of the book La fabrique de malades: ces maladies qu’on nous invente (Disease Factory: The Diseases They Invent for Us).

The reality is more mixed. With modern medical techniques, it is now possible to detect infinitesimal anomalies in the human body, such as lumps of cancerous cells a few millimetres in size. The benefits are sometimes clearly shown. For instance, screening for cervical cancer and colon cancer permits better management of these diseases.

“But certain screenings sometimes detect real anomalies that pose no health risk,” says Dr Arnaud Chiolero (Privat-Docent),

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Promoting awareness among the Swiss The debate will heat up in Switzerland: this year the Frenchspeaking Swiss Consumer Federation, together with its Italianand Germanspeaking sister organisations, is launching an information campaign to raise public awareness about overmedicalisation.

A number of corresponding initiatives will also be put in place. “It’s a complex problem that is tricky to publicise and that should not be lumped together with low-cost medicine. Rather, it should be clearly identified with medical acts whose benefits to health have not been scientifically demonstrated,” wrote the Federation on its website in January 2014.

epidemiologist at the University Institute for Social and Preventive Medicine at the Lausanne University Hospital (CHUV) and author of a literature review on the subject, published in the Swiss Medical Forum.

“This is what is called over-diagnosis.”

Over-diagnosis is the consequence of preventive and highly technological medicine. Prevention through screening is based on the premise that the earlier a disease is detected, the better it can be treated. “It is clear that prevention has proved its case in many fields, such as cardiovascular disease (e.g. screening and treatment for severe arterial hypertension to prevent strokes) and cancer (e.g. cervical cancer screening),” continues Arnaud Chiolero. “Unfortunately, in some cases, the identification of an anomaly in a person leads to treatment when this anomaly would never have caused symptoms or led to death. It’s a major problem because over-diagnosis leads to over-treatment, which provides no benefit to the patient but can be a source of side effects and complications. Plus, the public-health costs can be quite high.”

Avoid invasive treatments

Screening for prostate cancer is a case in point. Tumours in the prostate are detected through blood analyses by measuring the level of PSA (Prostate

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trends

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trends

hypertensive. At certain thresholds, the benefit of treatment becomes minimal, even too low with regard to the costs and secondary risks of treatment. The difficulty for doctors is therefore to establish the correct threshold, avoiding over-diagnosis without going so far as to allow for under-diagnosis.”

Specific Antigen). This protein is produced naturally by prostate cells. But cancerous cells secrete ten times as much PSA as normal cells. By measuring the PSA concentration, the development of cancer in the patient can thus be suspected.

“Studies indicate that 30 to 70% of men over 60 years old have a prostate tumour,” says Arnaud Chiolero. “If it is detected during the person’s lifetime, the problem becomes understanding how it will evolve.

Will it become an aggressive cancer, or will it grow very slowly without ever putting the patient at risk? The estimates are very uncertain, but it appears that 17 to 66% of the cases detected by PSA meet the definition of over-diagnosis. That is to say, the patient will not develop symptoms secondary to this tumour and will not die from it, whether treated or not.”

In addition to the stress caused by such a diagnosis, the surgical treatment of prostate cancer is not without consequence for the patient, often causing impotence and incontinence.

Many anomalies are discovered by chance during radiological tests, which are another major source of over-diagnosis.

American researchers analysed the images of full-body CT scans conducted on 1,192 people who presented no particular health problems. Their results, published in the journal Radiological Society of North America (RSNA), show that 86% of them presented anomalies, most of which were of no consequence to the patients’ health.

“Apart from screening, a more subtle form of over-diagnosis is linked to the lowering of threshold values for risk factors,” continues Arnaud Chiolero. “For example, reducing the normal arterial blood pressure value automatically increases the number of people considered to be

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A telling acronym For some years now, a new acronym has been catching on in English-speaking medical circles: “VOMIT”, which stands for “Victim of Modern Imaging Technology”. It condemns futile treatments and operations to which certain patients fall victim after medical imaging tests.

Most of these cases are due to errors of image interpretation.

The concern of doctors not to miss a diagnosis and the requests of patients for reassurance as to the absence of an anomaly can generate over-diagnosis.

“Any screening test should be accompanied by information on the advantages and disadvantages of such a test, and on the risk of over-diagnosis. It is necessary to anticipate the consequences of discovering anomalies, and to aim for an informed decision shared with the patient,” says Arnaud Chiolero. “Overdiagnosis can be prevented by avoiding certain tests whose efficacy has not been proven and, in some cases, by carrying out targeted screening. Another approach, which is the subject of many research studies, is to better identify the nature of the anomalies discovered, so as to distinguish between those that will develop harmlessly and can be monitored without treatment (e.g. active monitoring of certain prostate cancers) and those that will develop unfavourably and require treatment.” ⁄

INTERVIEW

DSM-5

the manual that is driving people crazy The new edition of the bible of psychiatry has been met with mixed reviews from specialists.

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trends

The publication in May 2013 of the 5th edition of the bible of psychiatry – the DSM-V (Diagnostic and Statistical Manual of Mental Disorders) – has aroused fierce criticism. Allen Frances, an American psychiatrist known for having overseen the revision of the DSM-IV, reproaches it in particular for inducing over-diagnosis in his essay, “Are we all mentally ill?”

Q&A with Pierre Bovet, physician in chief of the Psychiatry Department at the Lausanne University Hospital (CHUV).

Why is the DSM-5 arousing so much controversy? pb In 1980, the publication of the DSM-III was met with relief by many psychiatrists. It aimed to put forward a classification and definitions of mental disorders that could be shared by all psychiatrists. The authors of this third edition only considered relevant the criteria for defining mental disorders’ symptoms that could be “objective”, seen by an observer as objects independent of the persona of the patient, and they disregarded an entire fundamental part of what constitutes the nature of psychiatric conditions and their relational aspect. Over the years, the flaws in this epistemology appeared more and more glaring, not only in the eyes of psychotherapists but also in those of researchers. In this context, the DSM-V was eagerly anticipated, and several hints from the working groups that prepared the manual suggested that epistemological reflection was in the offing. This was not the case, and even the most enthusiastic promoters of the previous editions started to complain.

Psychiatrist Pierre Bovet believes the DSM-5 may lead to over-diagnosis.

How does the DSM influence psychiatric practice? pb The problem is particularly acute in the United States, as the criteria of the DSM hold legal force in the fields of insurance and justice. In addition, psychopathology teaching is often limited to what the manual says; in other iv

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HEIDI DIAZ

iv

words, a given mental disorder is “only” what the DSM says. The situation is less dramatic in Europe, where the DSM holds no legal weight and where a more refined and deeper psychopathology is still taught in many areas. But danger lies ahead! Scientific journals tend to accept articles only if they follow the criteria of the DSM – which greatly limits research.

Allen Frances also reproaches the DSM-5 for inducing over-diagnosis… pb In this latest edition, the “threshold” criteria for defining certain disorders, such as hyperactivity with attention deficit in children, have been reduced.

Moreover, certain reactions considered in the previous editions as “normal” (e.g. a period of depression after bereavement) iv

are now considered as pathological; somewhat excessive types of behaviour (sexual or with the internet) are classed as being “substance-free addictions” on the basis of criteria which are poorly established from a scientific point of view; and minor cognitive disorders that normally appear with age are “pathologised”, contributing to increasing anxiety in people in whom small memory lapses arise, because it erroneously leads them to believe that they are on the brink of Alzheimer’s disease. It will have to be seen how these innovations will be applied in practice by psychiatrists in Switzerland. At the moment, the problem is underdetection and under-treatment of certain mental disorders such as major depression, because of the stigmatisation which still accompanies psychiatric disorders.

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decoding

Drugs too can die

Many patents are now nearing expiration.

This phenomenon, dubbed the “patent cliff”, has pharmaceutical giants trembling. n one fell swoop, several billions of dollars were wiped from the earnings of the US group, Pfizer. Sales of its star cholesterollowering drug Lipitor, one of the most sold drugs in the world, had reached the colossal Text sum of $10.7 billion in Sophie 2010. The product then Gaitzsch came into the public domain in November 2011, leading to the arrival of less-expensive generics. The company subsequently saw its revenue from Lipitor slashed by over half.

The case of Lipitor illustrates a global trend. The pharmaceutical industry has been confronted by an unprecedented wave of patent expiries since 2012. This phenomenon, dubbed the “patent cliff ”, will likely continue until 2018. The consulting firm EvaluatePharma estimates that the total sum at stake is $230 billion for the 2013-2016 period. Swiss giants Novartis and Roche are affected as well, in particular due to the loss of exclusivity for many oncological products.

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“Many drugs for preventing cardiovascular diseases (against cholesterol, diabetes and hypertension) were created in the 1990s,” says Thierry Buclin, physician in chief of the Clinical Pharmacology Division at the Lausanne University Hospital (CHUV).

“Used by many patients all year round, they have been hugely successful. These

Name: NORVIR FROM: Abbott Laboratories for: Treating HIV

Norvir will lose its patent in 2015, much to the delight of defenders of public health. “It’s a drug that is commonly used as a ‘booster’ in combination with other drugs for treating HIV,” says Peter Beyer, senior advisor in the Department of Public Health, Innovation and Intellectual Property at the WHO. “It is considered as essential by the WHO. With the end of the patent, prices will go down, which will benefit patients and humanitarian aid programmes.

The product is already being marketed at lower prices in developing countries. The change to generics will have an impact in middle-income countries in particular.” In 2012, Norvir made $405 million for Abbott Laboratories, the American group that markets the drug.

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Name: RITUXAN from: Roche for: Treating cancer Swiss giant Roche still has a few years’ respite. Rituxan, sold under the name MabThera in the United States, will lose its patent in 2018.

Rituxan is one of the group’s blockbuster drugs, used to treat certain lymphomas. Its sales totalled over $7 billion in 2012.

Rituxan is not a chemical treatment, but a biological treatment, which makes it more difficult to copy. This feature offers some protection against competition from generics manufacturers.

Experts estimate that when a patent expires for a chemical product, revenue decreases by 80% to 90% in two years.

For biological one, the reduction is around 30% to 50%.

Decoding

preparations are now coming into the public domain.” In the pharmaceutical industry, patents last 20 years and serve as a means of ensuring profit for the laboratories which invest – $1 billion on average – in the development of a new drug.

Faced with these massive losses in revenue, one might expect to see the pharmaceutical laboratories double their innovation efforts. Not so: expenditure on research has been slowing since 2008.

“The chances of finding the next blockbuster are very small because treatments for chronic diseases – the most profitable – are already on the market,” says Lisa Urquhart, chief editor of EP Vantage, a specialised publication.

“Moreover, regulations for approving new products are much stricter than in the past. The fields of cancer and Alzheimer’s disease remain very promising, but they involve research that is very difficult to conduct.”

On the other hand, companies are devoting energy to prolonging the effect of existing patents for as long as possible, a strategy called “evergreening”. “They release slightly modified versions of a medicinal product on the market, for example with a new formulation or manufacturing process,” says Nathalie Vernaz, a pharmacist at Geneva University Hospitals (HUG) who conducted a study on the matter, published in the American journal

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PLOS Medicine. “With clever marketing, they redirect consumers toward these products.” Another tactic of the pharmaceutical companies is that they aim to diversify their activities, for example by launching into the manufacture of medical equipment or generics, as Novartis has done with its subsidiary Sandoz.

And what about the patients? What do they get out of the “patent cliff ”? Peter Beyer, senior advisor in the Department of Public Health, Innovation and Intellectual Property at the World Health Organisation (WHO), has this to say: “Just because a drug sells well doesn’t necessarily mean it is very useful. The ‘patent cliff ’ affects only a few drugs considered essential by the WHO. But these patent expiries are good news in terms of health costs.”⁄

Name: NEXIUM from: AstraZeneca for: Treating gastric ulcers Nexium is considered a prime example of “evergreening”. The drug is the successor of Omeprazole, a similar treatment against gastric ulcers. The British laboratory AstraZeneca launched Nexium on the market in 2001, before the end of the Omeprazole patent. By charging lower prices and thanks to intensive marketing to doctors, AstraZeneca was able to redirect its customers to the new drug, thus protecting itself from genetic product competitors. Numerous specialists have complained that the product is not really any different from its predecessor. Despite the criticism, Nexium, which will enter the public domain in 2014, is a commercial success. The drug made $3.9 billion for AstraZeneca in 2012. According to data published by the Swiss Federal Parliament, Nexium was second on the list of most highly sold drugs in Switzerland in 2008.

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decoding

“The potential for generics is under exploited in Switzerland” interview For Thierry Buclin, the health system could reduce costs by revising its law on drug reimbursement.

Are we seeing an influx of new generic drugs thanks to the “patent cliff”? tb New generics have been appearing on the market regularly for years. The “patent cliff” phenomenon is speeding up their rate of appearance. But this does not represent a massive change in the total quantity of preparations available. iv

Does the Swiss health system benefit from the phenomenon? tb Having access to equivalent preparations that cost less is good news. Unfortunately, the potential for generics is under exploited in Switzerland. There is a problem of acceptability, sometimes for highly subjective reasons:

people prefer the original to the copy. In reality, problems caused by generics are extremely rare, but they are intentionally blown out of proportion by the large pharmaceutical groups who are trying to protect their own interests. There is also a price issue: generics remain relatively expensive, more expensive than everywhere else in Europe.

eric déroze

iv

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What is the reason behind this price difference? tb Once a drug has come into the public domain, the different companies that distribute it are in competition with each other, which should make the price fall. But this mechanism does not work well iv

in Switzerland because of the reimbursement conditions laid down by the law. To be covered by basic insurance, generics must be only 10% to 60% cheaper than the original preparation, depending on their market volume. This rule allows manufacturers to tacitly agree on prices. In Great Britain, for example, some generics are 90% cheaper than the original. So in Switzerland there are possibilities for reducing costs which are not being exploited.

Thierry Buclin is physician in chief of the Clinical Pharmacology Division at the CHUV.

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Decoding commentary

pierre-yves geoffard Director of the Paris School of Economics and Director of Research at France’s National Centre for Scientific Research (CNRS)

We need a public health policy to govern medical tourism.

Local populations should benefit from its effects.

Much of this movement concerns patients going from one southern country to another southern country.

In healthcare, as in any sector, globalisation affects the entire planet.

Across many sectors, new information technology is putting consumers and producers in contact despite the fact that they are sometimes very far from one another. This is fuelling the development of international business, and healthcare is no exception.

For the patients who leave their home country, this choice has its advantages: new treatment options that cost much less.

One of the effects of this phenomenon is the emergence of “medical tourism”.

It is increasingly common to see patients from one country go to another country for treatment, especially if they have poor health insurance coverage. For example, a coronary bypass, which can cost $100,000 in the United States, is just $12,000 in Thailand.

For the destination country, however, the situation is more difficult to assess.

Admittedly, medical tourism brings in foreign currencies, helps finance modern hospital facilities and provides top healthcare professionals with working conditions that are similar to what they could find in richer countries. But it remains unclear whether the local patients benefit from this higher-quality healthcare. Foreign customers are sometimes treated first, even when medical care is already sparse and hospital services are backed up.

Furthermore, in the countries most involved in providing healthcare to foreign patients — particularly India, Singapore and Thailand — more and more hospitals are gaining accreditation from international organisations To prevent this “eviction” effect, some countries with strict quality and safety standards. require hospitals open to “medical tourists” to And services are not limited to hospital devote a portion of their care to local populations care. Even in Europe, they include poorly at affordable prices. This type of public health reimbursed healthcare needs such as dental policy is needed to guarantee equitable access to care and prosthetics. healthcare while allowing the country to benefit from international trade.

PROFILE

Pierre-Yves Geoffard, healthcare policy specialist, is Director of the Paris School of Economics since February 2013. He is a regular columnist for the French newspaper Libération and has co-authored a number of books on healthcare costs.

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www.parisschoolofeconomics.eu

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Thoughtcontrolled prostheses Quadriplegic and amputee patients are now able to control their artificial limbs.

Neuroprostheses will one day help them regain their sense of touch.

C

Text: Thomas Pfefferlé

ollaboration in technological and surgical research has spawned prostheses that connect directly to the brain. These artificial limbs will revolutionise the lives of amputees and paralytics. “The devices function as extensions of the body,” says Wassim Raffoul, chief of the Plastic and Reconstructive Surgery Service at Lausanne University Hospital (CHUV).

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“They connect to the nervous system and reproduce movements that the patient thinks about. Prostheses controlled by muscle contraction existed already but, far from being intuitive, the learning curve for patients was too steep.”

In the United States, neuroprosthesis research focuses on quadriplegics. These patients have no electrical activity in the nerves that run through their limbs. So in order for them to control an artificial limb, it must connect directly to the source of the nerve impulses – the brain.

Brown University in the state of Rhode Island has developed a neural implant that enables completely paralysed patients

to control a robotic arm with their mind. The implant is inserted in the motor cortex – the part of the brain that controls voluntary movement – where it senses the commands emitted when a person thinks of movement.

These commands are then transmitted to a computer, where the information is decoded and sent to the artificial limb. A clinical trial was conducted in 2012 by the United States Department of Veterans Affairs, the US National Institutes of Health, Brown University, Massachusetts General Hospital, Harvard Medical School and the German Aerospace Centre, which built the robotic arm. One woman, paralysed by a stroke, was able to pick up a thermos of coffee using the prototype.

“This is another big jump forward to control the movements of a robotic arm in three-dimensional space,” writes John Donoghue, director of the Brown University Institute for Brain Science, in the journal “Nature”. The scientists are now working to make the whole device less bulky and are developing a Wi-Fi system to

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Lifehand 2, Patrizia Tocci

Dennis Aabo Sorensen from Denmark had his left hand amputated ten years ago.

In March 2013, he gripped and was able to feel several different objects using the neuroprosthesis developed by the Swiss Federal Institute of Technology in Lausanne along with several Italian and German universities and hospitals.

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HOW DOES A NEUROPROSTHESIS WORK?

eliminate the wires connecting the implant to the computer.

Sensory feeling

The Epione project involves several European universities and laboratories with the long-term goal to develop neuroprostheses for amputees. In 2014, the CHUV will begin conducting clinical trials in collaboration with the Swiss Federal Institute of Technology in Lausanne (EPFL).

“The idea of the project is to develop artificial limbs allowing patients to regain their sense of touch,” says Wassim Raffoul.

Silvestro Micera runs the Neural Engineering Laboratory at the Swiss Federal Institute of Technology in Lausanne and is part of the Epione project. He achieved impressive results during different clinical trials conducted in Rome. A patient with an amputated forearm was able to control a robotic hand by thought and feel what he was touching.

The researcher accomplished this feat by connecting electrodes implanted in the patient’s nerve fibres to an artificial hand. “We achieved excellent results in 2009,” says Silvestro Micera. “The patient regained his sense of touch, which greatly reduced his phantom pain. And as far as surgery goes, this operation is much simpler than a human hand transplant. We repeated the experiment on another patient in 2013 (Dennis Aabo Sorensen, on p. 51). He was able to control his prosthesis in real time and had even more accurate sensations.”

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We are only five to ten years away from seeing the first complete, marketable neuroprostheses.

Speaking of regaining sensory feeling, Stéphanie Lacour, head of the Neuroprosthetic Chair at the EPFL, is working on artificial micro-channels for reconnecting severed nerves. This type of injury can lead to loss of feeling and motor function in a limb, since the limb is no longer connected to the brain. “Until now, doctors have been using collagen tubes in which the nerve extremities partially reconnect,” says Stéphanie Lacour. “This procedure allows patients to regain only partial feeling and motor function, since the axons – minuscule fibres that make up the nerves – do not reconnect fast enough. The tubes that we have designed are smaller and will help the axons reconnect more easily.”

The researchers are also trying to understand what types of information circulate in the nerves.

“We don’t yet know exactly where information on voluntary movement and sensory perception circulates inside the nerve,” says surgeon Wassim Raffoul. “You have to imagine the scale that we are working at: for instance, the sciatic nerve of a rat is 1.5 millimetres in diameter. Fortunately, we don’t have to reproduce the details of our anatomy perfectly to be able to connect neuroprostheses to the nervous system. By broadly capturing the electrical activity circulating in the nerves, we’re already achieving very good results.”

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1

Nerve endings remain active after amputation.

3

Once “reinnervated”, the muscle contracts when the patient thinks about moving their arm.

5

2

Nerves are redirected to another muscle through surgical procedure.

4

Electrodes sense the contraction and send the information to a computer located inside the prosthetic device.

The computer reads the control signals and activates limb movement.

This series of diagrams illustrates one of the methods currently used to control a neuroprosthetic device.

If all these research projects are successful, amputees can hope to receive an arm or leg that is extremely close to the original. “Our goal is to help these patients regain the best quality of life possible,” says Wassim Raffoul. “Neuroprostheses seem to be an excellent way to get there.”/

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Ramon Espelt Gorgozo / 123rtf

Meditation as therapy

Text Geneviève Ruiz

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Meditation is being embraced by patients and by the medical profession.

Its techniques are shown to be effective in preventing and managing diseases, and improving overall well-being.

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he story began 2,500 years ago in Asia.

In Buddhist monasteries and Tibetan caves, monks would spend hours, even years, meditating. They consequently developed a multitude of techniques and considerable know-how. In 1979 Jon Kabat-Zinn, professor of medicine at the University of Massachusetts, was the first person to gain inspiration from this time-honoured tradition to create a method called Mindfulness-Based Stress Reduction (MBSR). Its aim: to introduce patients to meditation techniques in an eight-week programme.

True or false?

Preconceptions on meditation

Meditation is supposed to help you relax – false The aim of meditation is not relaxation, even if that can sometimes be a collateral benefit. The point is to observe your bodily sensations, thoughts and emotions, without judgement.

Meditation is a spiritual practice – TRUE Meditation has its origins in many religious traditions, most notably Buddhism. But the methods currently taught in hospitals and schools are secular and do not involve any particular religious belief.

The results obtained with the Jon Kabat-Zinn method were such that it is now used in over 200 hospitals in the US and 700 more around the world. “The tremendous merit of Jon Kabat-Zinn was to secularise Buddhist practices, synthesise their most powerful elements and structure them into a method accessible to everyone,” says rheumatologist Jean-Gérard Bloch, MBSR instructor and founder of the first European university diploma dedicated to meditation at the University of Strasbourg. “This method then provided a framework for the various scientific research studies that have been conducted on meditation.”

Proven beneficial effects

With the advances in neurosciences and CORPORE SANO

Trends

brain imaging, this research has progressed in leaps and bounds since the beginning of the 2000s. Important figures such as Richard Davidson from the University of Wisconsin, who arranged for Buddhist monks (French biologist Matthieu Ricard (see interview p. 30) and the Dalai Lama) to take part in his experiments, greatly contributed to bringing this age-old activity to light.

He was thus able to demonstrate by electroencephalography that intensive practice of meditation transformed the structure and operation of the brain.

Researchers then continued to observe the many positive effects of meditation, both physical and psychological.

Hundreds of publications are now issued every year on the subject. In April 2012, nearly 700 researchers from throughout the world met in Denver, USA, for the first International Symposia on Contemplative Studies.

The benefits of meditation measured by science include the thickening of the left prefrontal cortex tissue, which is involved in cognitive and emotional processes. There is also the increase in attention capacity and reduction in stress, with a reduction in cortisol (stress hormone). Other research studies show an improvement in disorders such as insomnia, cardiac problems and hypertension. Patients could also manage their pain better.

Preventing relapse of depression

So far, meditation has been integrated less in European hospitals than in the United States. But for some years now it has started to be offered in Europe as a complementary therapy to prevent relapse in cases of depression or addiction. For example, the psychologist-

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gilles weber

Meditation is accessible to everyone – TRUE Anyone has the potential to meditate. However, developing a solid practice requires some initial training and a continued commitment.

Studies showing the benefits of meditation often emphasise that these effects are proportional to the amount of meditation practised.

The psychologist Valérie Rossier offers meditation sessions at the Lausanne University Hospital: “We have a huge number of requests from patients.”

psychotherapist Valérie Rossier proposes joint or individual mindfulness meditation sessions for patients treated for addiction at the CHUV Community Psychiatry Service. “Several studies observed that practising meditation reduced people’s impulsiveness and therefore their irrepressible desire to consume a substance,” says Valérie Rossier. “Research is at the hypothesis stage, and there is still no clear explanation. But I am noticing that patients who regularly practise meditation have less risk of relapse.”

The same observation was made at the Geneva University Hospitals (HUG) by psychologist Françoise Jermann, who for several years has been offering another Jon Kabat-Zinn method called Mindfulness-Based Cognitive Therapy (MBCT) to patients in remission from depression: “We have good feedback from our patients. For many, it is a complementary tool to their medication treatment. Sometimes it is even the trigger for a life change. There is only a minority for whom it doesn’t work at all.” The two practitioners note that patients are very passionate about meditation. “I am inundated with requests from patients facing numerous diseases, especially cancer,” CORPORE SANO

The aim of meditation is not to think any more – false The aim is not to stop thinking, but to allow your thoughts to flow. Meditation consists of training your attention capacity and anchoring it in the present moment. To do so, meditation can incorporate any number of techniques, such as focusing on breathing, scanning the body, or fixating on a particular object.

Trends

says Valérie Rossier. “Unfortunately, I can’t answer them all.”

This success can also be observed within the medical profession. In February 2012, rheumatologist Jean-Gérard Bloch launched the first European diploma in meditation intended for healthcare staff. He had to refuse many candidates.

“I’m noticing a real interest from my colleagues, and I think that meditation techniques will help Western medicine to evolve. The seeds of change can be felt in the emergence of new disciplines such as neuropsychoimmunology, which combines the study of the mind, brain, nervous system and hormones to understand the impact of the brain on immune defences and vice versa.

After having separated the body from the mind for centuries – which permitted huge progress – medicine is now re-combining them, thanks mainly to the proven effects of meditation.”

In addition to medicine, meditation could also transform other sectors of society, such as management and education. An increasing number of schools in the United States, Great Britain, France and the Netherlands are adding meditation to their programme. The results are reportedly better scholastic performance and less aggressiveness among pupils.

Some prisons are also beginning to offer MBSR sessions to their inmates.

“This interest brings hope,” says Jean-Gérard Bloch. “But it also entails risks: meditation is a complex practice that requires a lot of training. It can’t be taught by just anyone. In the current context, there are some self-professed teachers of meditation who have neither the experience nor the necessary knowledge.” ⁄

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Text Jean-Christophe Piot

Microbes, our 100 trillion friends Every human being has approximately two kilos of bacteria, yeast, fungi and other viruses in their body. Taming these microorganisms could turn them into valuable allies.

“E

ach individual permanently bathes in a vast soup of microorganisms.”

This is the image that Thierry Calandra, chief of the Infectious Diseases Service at the Lausanne University Hospital (CHUV) uses to explain that a considerable proportion of the human body consists of microbes. Even so, science knows very little about these invisible visitors, estimated at 100 trillion in each person (100’000 billions), i.e. ten times more numerous than human cells, with a total weight of about 2 kilos. To remedy this, a vast project called the Human Microbiome Project (HMP) was started in 2007.

Launched by the US National Institutes of Health, this long-term $195 million programme aims to identify the microbes that live on humans and decipher their genome in order to understand how they affect the human being. It’s a meticulous task that is CORPORE SANO

leading to promising prospects in terms of new treatments.

This gigantic quantity of microbes is nothing to panic about: far from attacking the body, microbes help protect it.

“Most of these microorganisms help the body maintain its functional equilibrium,” says Thierry Calandra. “Even better, they are continuously building up the immune system to enable our body to deal with them.” To the point where the cohabitation between a human host and the microorganisms that colonise it resembles a strategic partnership. Some microbes serve as a first line of defence, attacking pathogens or preventing them from developing. But they are fragile fortifications: travelling, an antibiotic treatment, or a change in diet may disrupt this delicate balance and increase the risk of infection or inflammation.

Can we intentionally develop this balance, for preventive or curative purposes? “It’s already happrospecting

pening,” says Thierry Calandra.

“It’s been known for a long time that the transplantation of faeces from one healthy individual to a patient with diarrhoea helps the latter’s recovery.”

By refining their knowledge of how the microbial world and our body influence one another, microbiologists and doctors can hope to reduce certain risks in the long term, and even treat various diseases by “adjusting” the microbiota. Studies in progress suggest that there may be huge possibilities in a variety of fields: psoriasis, Crohn’s disease, obesity, ulcerous colitis, allergies, acne, etc. There is vast potential, but “the complexity of this equation with many unknowns prevents us from knowing when we will be able to move on to concrete clinical applications,” stresses Thierry Calandra.

And although researchers are working tirelessly, the road is still very long: the HMP is dedicating over 2,600 projects to the

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EYE OF SCIENCE / SCIENCE PHOTO LIBRARY

This image obtained by an electronic scanning microscope shows a “Lactobacillus casei”. This bacterium produces bacteriocins, which are proteins that have antibiotic properties.

They can thus prevent certain infections in humans.

sequencing of the microbial genome. Only 15 of them are currently dedicated to the search for hypothetical correlations between the microbiome and human health. The slow pace is explained by the complexity of protocols and an out-of-the-ordinary indexing effort: a human being has 20,000-25,000 genes.

In six years, the 80 laboratories involved in the HMP have already identified 8 million microbial genes…

Beyond the therapeutic prospects, the HMP studies are helping to slowly refine knowledge CORPORE SANO

of microorganisms, demolishing certain preconceptions. “Most microbes are either useful or harmless,” says Amelio Telenti, professor at the CHUV Microbiology Institute. Microbes that proliferate in our intestines carry out essential digestive functions: bacteria in the intestines break down certain carbohydrates and encourage absorption by the body of the very essential vitamin K. This complex combination of hundreds of different species turns each human being into a macrocosm populated by a prospecting

particular microcosm. “Eventually, we could probably identify an individual by analysing the entirety of their flora,” says Amelio Telenti. At least in theory: “The microbiota of a human being is continuously changing in terms of age, environment and diet. This does not make it easy to conduct research.”

So it will probably be some time yet before policemen will be taking samples of intestinal flora rather than fingerprints. ⁄

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Death immortalised Forensic Imaging After remaining unchanged for nearly two centuries, the world of autopsy and forensic medicine has experienced an unprecedented upheaval with the introduction of imaging.

Text: bertrand tappy

“I shot him in the head to put an end to his suffering.” The sentence is short, but for the doctors at the University Centre of Legal Medicine in Lausanne (CURML) it is yet another enigma to solve: is the person who did the shooting telling the truth? Or was his real intention to get rid of the other person? Silke Grabherr, head of the Forensic Imaging Unit, has already come up against these situations hundreds of times. “Our job is not only to find the causes of death,” she says. “The witness statements must be systematically compared with the reality expressed by the body. And to do this, we cannot overlook even the tiniest injury.”

The specialist and her team have therefore developed a unique technique, which combines systematically scanning all bodies that arrive at the morgue and – if necessary – carrying out an angiogram using a revolutionary technique.

Explanations in six cases.

DEATH BY GUNSHOT WOUND

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The three images opposite show the skull and brain of the same person, who died from a gunshot wound. The bullet can be seen as the bright spot in the frontal section of the brain (left). The cadaver is one of the 500 to 600 cases treated every year by forensic medicine specialists in the Lausanne region.

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In the lens

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In the lens

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EXAMINATION OF BLOOD VESSELS

If a death is classified as “suspicious” or “violent”, the body is brought to the Centre for Forensic Medicine for a scan and external examination.

It is then up to the prosecutor involved in the case to decide whether the specialists should perform an autopsy and, potentially, an angiography (see image above). This medical imaging technique is used to visualise the blood vessels.

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AIR BUBBLES

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For the novice radiologist, images of a dead body are a shocking spectacle. “Six to eight hours after death, air bubbles can already form inside the body (seen as black spots in the right-hand image). If the specialist does not know that the person is dead, they will diagnose it as an embolism or other pathology,” says Silke Grabherr. “It would be understandable, but wrong. In a cadaver, these bubbles can come from the blood settling with respect to the position of the body or from distortions caused by rigor mortis.”

In the lens

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4/

SKULL FRACTURE

The person pictured above, who has a major skull fracture, was the victim of a fall at their place of work. The coroner can therefore determine the precise point of impact.

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In the lens

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DEATH BY GUNSHOT WOUND

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Below is a second 3D reconstitution image of the skull of a victim of a gunshot wound to the head.

Thanks to the imaging technology, the projectile’s trajectory was reproduced (see image opposite) without moving the bone or bullet fragments inside the head. Seeing inside the body without opening it is one of the great advantages of forensic imaging. As well, there is a great savings of time: an angiography takes two hours at most, whereas a traditional autopsy of the body of a knife-wound victim can take up to 10 hours.

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HEART OF CONTRASTS

When we die, our heart stops beating. We all know that, but this presents a practical problem. The contrast dye injected, which is required for an angiography, cannot flow. No more heartbeat, no more natural blood circulation and therefore no more flow of the contrast dye through the blood vessels. “To work around the problem, we had to find a way for the dye to circulate,” says Silke Grabherr. “It took several years of research to find the ideal solution that would provide images used to reproduce the blood vessels exactly (see image above).”

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In the lens

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CHEST RECONSTITUTION

This reconstitution of the vessels in the chest and abdomen would never have been seen in a traditional autopsy. Today, specialists from numerous countries come for training in forensic imaging techniques developed in Lausanne. “Some countries are turning to this non-invasive method for cultural reasons,” says Silke Grabherr.

“Especially in Arab countries, where opening the body of a deceased person poses a religious problem.”

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In the lens

IMAGES: CURML / forensic imaging unit

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The superpowers of stem cells

Regenerative medicine could one day enable human tissues to repair themselves. An overview of the promising prospects.

Text: Julie Zaugg

ith his cowboy hat, droopy moustache and leather waistcoat, Billy Whitfield looks like any typical rancher. But for several years this stockbreeder from Kansas could no longer read, ride horses or drive: he was starting to lose his sight as a result of age-related macular degeneration. Everything changed though on 26 March 2013, when he received an injection of cells of the outer pigmented layer of the retina, derived from stem cells, as part of a phase 1 clinical study conducted by the University of California in collaboration with the firm Advanced Cell Technology (ACT).

which acts as a natural barrier between the blood vessels and the photoreceptors, the seat of vision,” says Matthew Vincent, one of the directors of ACT. “With our method, it can be replaced, thus allowing the function of the photoreceptors to be restored.” By the end of May, just two months after

“We treated about thirty patients in this way,” says Matthew Vincent. “In over half of them,

What is a stem cell?

A stem cell is an “undifferentiated” cell. In other words, it’s a cell that has not yet become specialised into a skin cell, bone cell or cell of any other organ. Stem cells of embryonic origin are said to be pluripotent and can become any tissue or organ. If instead a stem cell is of adult origin, it will only become what it has been programmed to become. However, a special technique developed in 2007 now enables adult cells to become pluripotent.

“Macular degeneration causes a deterioration of this fine layer, CORPORE SANO

the operation, Billy Whitfield’s visual acuity had increased from 20/800 to 20/40 (20/20 being perfect vision). He could ride horses again, and even read books.

INNOVATION

Placed on a pinhead, this embryonic stem cell is pluripotent, which means it can differentiate into most types of cells in the organism depending on the type of biochemical signal it receives.

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INNOVATION

STEVE GSCHMEISSNER / SCIENCE PHOTO LIBRARY

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including Billy Whitfield, we observed an improvement in vision, modest for some and spectacular for others.” In the future, ACT hopes to be able to replace cells destroyed by other eye diseases, such as glaucoma and retinitis pigmentosa.

Stem-cell based therapies are in the process of revolutionising regenerative medicine. “For now, we simply manage the cell damage caused by a disease,” says Dr Deepak Srivastava, one of the directors of the International Society for Stem Cell Research (ISSCR) in Skokie, Illinois (USA).

“In the future, we will be able to completely replace the damaged material with new cells and thus regenerate tissues and entire organs.”

From paralysis to infarction

Martin Marsala, professor of biomedicine at the University of San Diego, is interested in the reparative properties of stem cells on the spinal cord.

He has tested the method on rats and is preparing to launch his first clinical study on eight paralysed humans. “In animal tests, the injected cells created connections with the host cells,” he says. “The stem cells also completely filled the cavity created by the injury.”

Martin Marsala refuses to raise the possibility that his patients might one day walk again. However, he has observed in rats “a reduction in CORPORE SANO

spasticity (editor’s note: involuntary muscle movement) and a slight improvement in motor function of the legs.”

Professor Marsala is not alone in his quest. Researchers all over the world have started to exploit the regenerative capacities of stem cells to cure diseases as diverse as diabetes, Alzheimer’s, deafness, strokes, multiple sclerosis and arthritis.

In Switzerland Thierry Pedrazzini, director of the Experimental Cardiology Unit at the Lausanne University Hospital (CHUV), is trying to activate, in situ, stem cells located in the heart to repair necrosed tissue after an infarction. “We are inspired by the mechanisms used by the skin or intestinal system to regenerate,” he says. Meanwhile, his colleague at Geneva University Hospitals, Marisa Jaconi, is developing a cardiac patch based on stem cells cultured in 3D in a biomatrix. “This facilitates their implantation,” she says.

For the moment, the two methods have only been tested on animals. Marisa Jaconi’s team is also preparing to produce perivascular (on the periphery of vessels) stem cells, which have already enabled researchers in Milan to treat five children with muscular dystrophy. The results of this clinical trial are expected shortly.

A bank of stem cells taken from aborted foetuses and used INNOVATION

to create skin dressings for major burns patients has also been set up at the CHUV. The hope placed in stem cell research is such that a Swiss Institute of Cell Therapies was created in 2010, in order to bring together and support these various efforts.

Ethical debate

Apart from such potential, there remains one problematic key issue: the origin of the stem cells (see illustration opposite).

Contrary to adult cells, embryonic cells have the advantage of being pluripotent, but they are banned in certain countries for ethical reasons. “In some countries, such as Germany, Austria, Ireland, Italy, Portugal, Poland or Japan, their use is absolutely forbidden or subject to very strict rules,” says Martin Marsala.

In Switzerland, the Federal Act on Research Involving Embryonic Stem Cells authorises their extraction for research purposes. But in practice, virtually none exist, as the Federal Act on Medically Assisted Reproduction stipulates that the production of surplus embryos is to be avoided.

An innovation, arising simultaneously in 2007 at the University of Wisconsin and Kyoto University, appeared capable of rendering these issues obsolete.

“We managed to produce pluripotent stem cells from adult cells, which we programmed to return to the initial state,” says

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EMBRYO Embryonic stem cells, which can differentiate into any cell of the body, are extracted from supernumerary embryos produced by in vitro fertilisation. The embryos are destroyed during the procedure, which poses an ethical problem.

But a recent discovery could resolve the issue: Swedish researchers have managed to obtain stem cells without compromising the viability of the embryo.

UMBILICAL CORD Blood from the umbilical cord is frozen at birth.

Later, blood stem cells can be extracted from it to treat blood diseases such as leukaemia, with limited risks of rejection.

However, they cannot be used to cure other kinds of diseases for the moment. From an ethical and legal point of view, these cells benefit from a more open status than embryonic stem cells.

Bob Palay, CEO of Cellular Dynamics, a company specialising in the manufacture of induced pluripotent stem cells (iPS cells). Specifically, the procedure consists of injecting into these adult cells a cocktail of genes normally present in stem cells. This causes the repression of the genes associated with cell specialisation, and makes them return to a pluripotent state, typical of the embryonic stage. iPS cells present the same advantages as stem cells coming from embryos, but escape the ethical controversies surrounding the latter, and, once differentiated, they do not risk provoking a rejection reaction CORPORE SANO

INDUCED PLURIPOTENT STEM CELLS A cell from the skin, blood or other organ taken from the patient is genetically reprogrammed into a stem cell capable of differentiating into any cell of the body. This technique makes it possible to circumvent the ethical issues associated with embryo stem cells—due to their recent discovery, it is too early to promise they’re safe to use.

from the patient, as they are produced from the patient’s own biological material (usually the skin or a blood sample). They will be used for the first time in 2014 in Kobe, as part of a clinical trial on six patients with macular degeneration.

Despite their promise, iPS cells are not risk-free. “They are assumed to behave exactly like embryonic stem cells, but that is not always the case,” notes Matthew Vincent. “Rather unstable, they tend to want to return to their previous state (editor’s note: a skin cell, for example).”

And that’s not all. “Research has shown that iPS cells can cause tumours, especially if INNOVATION

ADULT STEM CELLS Stem cells play a role in the natural process of tissue renewal throughout the body. They can be harvested mainly from a patient’s bone marrow or taken from fat tissue.

These stem cells can only regenerate certain types of tissue because they cannot be differentiated into all cell types. There is no risk of rejection as they are taken directly from the patient.

they are not fully differentiated,” states Lee Ann LaurentApplegate, a specialist in skin regeneration and director of the Cell Therapy Unit at the CHUV. Thierry Pedrazzini nevertheless believes that “if we learn how to control their differentiation process, iPS cells will end up taking the lead.” Easy to extract, available in unlimited quantities and free of ethical considerations, they unquestionably have everything going for them. ⁄

infographie: La tigre

THE ORIGIN OF STEM CELLS

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Iproniazid C 9H 13N 3O

C 9H 13N 3O every molecule tells A story Text: bertrand tappy

The story of antidepressants began purely by chance: “In the late 1950s researchers discovered that iproniazid, a drug used to treat tuberculosis, had a positive effect on patients suffering from depression,” explains Thierry Buclin, chief physician of the Clinical Pharmacology Division at the Lausanne University Hospital (CHUV).

“That discovery led people to believe that depression could be treated as though it were a simple infection. Which turned out to be false.”

Two decades later, the results were mixed.

“There were quite a lot of side effects,” continues Thierry Buclin. “In the 1990s there was a shift towards

The arrival on the market of antidepressants has been marked by many controversies that illustrate the lack of transparency in pharmaceutical research. serotonergics, which were much better tolerated and thus able to be distributed widely among general practitioners.” The market was lucrative, and more and more products were being released.

foot down. At the same time several lawsuits were filed in the United States by patient associations, culminating in the disclosure of files submitted by pharmaceutical companies to health organisations.

But by 1995, the enthusiasm had begun to wane. A study by the “British Medical Journal” revealed that the use of “new generation” antidepressants increased the risk of suicide. It wasn’t until 2005 that the US Food and Drug Administration (FDA) – criticised for its laxity – decided to put its

It was revealed that the vast majority of research with negative results had been kept secret, while research showing positive results was widely publicised.

Companies could simply choose to have research “forgotten” if the conclusions were unflattering, and there was no one to

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zoom

hold them accountable (see p. 26).

The situation is understandable given that 80 per cent of clinical trials are paid for by pharmaceutical companies themselves.

“The new rules put in place since then have been very strict, creating difficulties for independent academic researchers in particular, who now need even more resources to conduct clinical research.” Only time will tell if stricter rules are really the best way to prevent research itself from sinking into depression.

TO LEARN MORE

David Healy, “The AntiDepressant Era”, Harvard University Press, 1999.

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ANN B. HAMRIC

Professor, Associate Dean of Academic Programs, VCU School of nursing, USA

In an increasingly complex healthcare system, advanced practice nurses are simply essential.

Chronically ill people have to deal day after day with a multitude of professionals, general practitioners and specialists active in their respective fields. At the heart of this complex system, patients are now expected to manage their own health, learn to perform technical procedures, and make decisions daily.

The discipline of nursing is continually evolving and expanding in greater practice skills, responsibilities, and authority for patient care. However, in many countries these recent trends are still unknown to the general public.

Advanced practice nurses (APNs) are particularly skilled in using a holistic perspective to individualize care, in guiding and coaching patients through difficult health transitions, and in developing partnerships with patients so that they can better manage their own health care problems. APNs provide support and help patients connect with the resources available in their community. APNs are given additional education for these expanded practices and care for patients of all ages. With clinical expertise required in their specialty and more understanding of the scientific bases of care, APNs mobilize a wide range of different approaches to promote health, prevent illness, and improve quality of life for their patients.

VCU School of Nursing

Nursing professional practice parameters and educational expectations have changed significantly in recent decades as nurses have advanced their practice abilities.

Many factors have driven the need for nurses to have more advanced and expanded practices: these factors include medical and technological advances, changes in patient demographics, and changing political and financial frameworks.

But the guiding focus for nursing professionals is to better meet patient needs, particularly for complex patients. Advanced nursing practice is experiencing a real These individuals are living longer with international expansion. Where APNs have been chronic illnesses, and many formerly fatal educated and have practiced for several decades diseases are much better controlled today. (e.g. there are more than 250,000 APNs in the Patients admitted to hospitals are sicker United States), the health system could not function than in previous years, but there are great without their contribution. Advancing nursing to pressures to reduce the duration of meet the most current needs of the population: hospitalizations to decrease hospital costs our definition of modernity! â „ and achieve greater financial efficiency.

TO LEARN MORE

www.nursing.vcu.edu/people/administrative/AnnHamric

CORPORE SANO

commentary

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commentary

This remarkable environment is a precious asset that must be cultivated on a daily basis. Doing so entails certain responsibiliHélène Brioschi Levi ties, which we lay out as Director of Healthcare commitments observed at the CHUV by both caregivers and the Healthcare division.

First, we must be committed to oday’s health providing professional care, which means professionals constantly making sure we manage risks are mobile and and provide access to high quality healthfree to choose care in line with proven models. Doing so where they want requires not only excellent collaboration to work or train. between the various professional bodies, Over 3,500 caregivers – doctors not included – have chosen to work at Lausanne but also sound expertise. We are therefore firmly committed to improving training, University Hospital (CHUV). and the quality of supervision and our Health professionals at the CHUV future health professionals. Moreover, enjoy exceptional advantages at the our status as a university hospital and national, regional and local levels. the growing number of students gravitatSwitzerland is politically stable and ecoing towards health professions offer the nomically prosperous, a country where ideal conditions for meeting the challenge three-quarters of the labour force work of conducting innovative research and in the service sector and where unempassing on knowledge about healthcare ployment rarely exceeds 4 per cent. The Lausanne region is home to the country’s practices. Most importantly, we accomlargest university campus as well as many plish all of this with the utmost consideration for our patients and the attention renowned educational institutions and a they deserve. Our expertise is meaningful dense economic fabric. The synergies between training, research and the economy only if used to help our patients, who trust us, while fully respecting each patient’s make Lausanne and its region a focal values, expectations and unique character. point for skills and expertise in highBeing a caregiver at the CHUV means value-added sectors. And the picture would be incomplete without mentioning becoming rooted in the region and making a commitment to serve one’s fellow the region’s traditionally multicultural citizens, colleagues and the institution. ⁄ character and pleasant lifestyle.

T

Matthieu Martin

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Healthcare faces the challenges of innovation

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Researcher rewarded

news

At the heart of anatomy

The European Research Council (ERC) has just announced the awardees of the 2013 Starting Grants. These include immunologist Dietmar Zehn, group head of the Immunology and Allergy Service at the Lausanne University Hospital (CHUV) and at the Swiss Vaccine Research Institute. Entitled “Identify novel pathways to enhance the induction of protective CD8 T cell responses,” this project will benefit from an “ERC Starting Grant” of 1.5 million euros over a 5-year period. BT

IMMUNOLOGY

A new hospital for young patients The GMP Hamburg – JB Ferrari group has been chosen by the jury to build the future Children’s Hospital, planned on the site of the Lausanne Hospital Complex. On 23 April 2013, the Grand Council of Vaud granted a loan of 170 million Swiss francs for its construction. BT PEDIATRICS

Interactive and immersive, the Anatomies exhibition offers a journey into the heart of representations of the human body. Visitors can discover a wide range of images, objects and stories of past and present, art and science, medicine and society. From old works to the latest imaging technologies, from anatomical preparations to virtual installations, Anatomies is an exhibition sponsored by the Swiss Natural Sciences Academy. BT

EXHIBITION

GO AND SEE

Anatomies, Musée de la main, Bugnon 21, 1011 Lausanne.

Until 17 August 2014

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Shared award Prof. Monika Hegi, head of the Laboratory of Brain Tumour Biology and Genetics in the Department of Clinical Neuroscience at the CHUV, received the Victor Levin Award at the 4th World Federation of Neuro-Oncology meeting, held in San Francisco at the end of November. She received this award together with Roger Stupp, head of the Division of Oncology at Zurich University Hospital and of the Zurich Cancer Centre. BT

NEURO-ONCOLOGY

Effects of electroshock The team at the Neuroimaging Research Laboratory have published a study on the potential effects of electroconvulsive therapy on the brain in the journal Proceedings of the National Academy of Sciences of the United States of America. These results may be useful for other treatments, such as deep brain stimulation and transcranial magnetic stimulation. BT

BRAIN

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career at the chuv

Eveline Geiser comes from MIT to conduct research on global timing perception.

Text: Bertrand tappy, photos: HEIDI DIAZ

f you ask Eveline Geiser to describe her research, don’t expect to wallow in a sea of abstract theories. The researcher at the Laboratory for Investigative Neurophysiology at the Lausanne University Hospital (CHUV) will tell you that global timing is something our brain uses daily to help us perceive our surroundings.

“Imagine you’re at a party, trying to hold a conversation amid the chatter and noise,” she says. “When put in a somewhat out-of-the-ordinary situation like this, your brain will function differently to adapt to the context. Scientists, however, are still trying to figure out just how the brain adapts and what part of the brain is at work in these types of situations. We do know that the brain’s capacity to adapt is often altered by brain injury, neurodegeneration, or simply old age.”

Global timing perception has fascinated Eveline Geiser for

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years. After studying psychology in her home town of Zurich, she went on to earn a Master’s degree from the prestigious Max Planck Institute in Leipzig.

That’s where she developed her passion for the brain and the question of rhythm. “I decided to pursue research that would allow me to combine two of my interests: brain functioning and hearing experience,” she says.

Eveline Geiser then headed to the United States to hone her skills in brain imaging techniques. There she earned a postdoc and was recruited as a research scientist by the top-flight Massachusetts Institute of Technology (MIT). After receiving support from the Swiss National Science Foundation, she joined the CHUV. In her neuroscience work, Eveline Geiser uses virtually every known imaging technique, ranging from anatomical and functional MRI to encephalography. “Some techniques allow us to visualise

interactions between the different regions of the brain, while others enable us to observe their reaction times,” she says.

The need for suitable technology is actually one of the reasons that brought her to the CHUV. “Lausanne has a sterling reputation for neuroscience,” says Eveline Geiser. “The Centre for Biomedical Imaging at the CHUV has MRI 3 and 7 tesla machines, which are the best devices for reproducing the functioning of the brain. Joining the CHUV has allowed me to work with people such as Stephanie Clarke, Micah Murray and Richard Frackowiak. And most importantly, I’m able to work closely with patients.”

Eveline Geiser’s research could have concrete applications down the road – for instance, new tests for screening brain deficiencies in cases of neurodegenerative disorders such as Parkinson’s disease. “My research will likely lead to new opportunities in personalised medicine as well, eventually offering patients customised treatment,” she says.

“That’s my vision and my goal.”

It’s a vision full of promise. ⁄

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career at the chuv

Eveline Geiser uses certain neuroimaging techniques to see areas of the brain in activity, while other techniques allow her to observe their responses and reactions.

The Centre for Biomedical Imaging at the CHUV has MRI 3 and 7 tesla machines. According to Eveline Geiser, “they are the best devices for reproducing the functioning of the brain.�

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Carlo rivolta

tandem

Francine behar-cohen

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hether Retinologist Francine Behar-Cohen for them: the former blue, have the job of and geneticist Carlo Rivolta brown diagnosing patients’ are developing a therapy for or green, the eyes diseases and providwere the first organs ing DNA samples retinal degeneration. to bring to light to the latter.

Text: Bertrand Tappy, photos: eric déroze the principles of hereditary diseases “Deciphering the and, consequently, genome used to be our genetic heritage. So it is no accident that our an expensive and laborious task,” recalls Carlo genes and our eyeballs are now one of the most Rivolta. “Research had to be targeted, with the studied duos in human genetics. hope of being lucky. Today, we can have all the information in one go.” Francine Behar-Cohen In his laboratory at the Lausanne Hospital adds, “The role of clinicians has become so comComplex, Carlo Rivolta has some of the most plicated. They have to analyse the mechanisms renowned geneticists in the field. He is the head of diseases so as to pinpoint potential molecular of a laboratory tasked with finding the detertargets and find common mechanisms that can mining genetic factors for retinal degenerative make up for the absence of correlations between diseases, which are difficult to screen and affect phenotype and genotype.” It’s a quest that has about one person out of every 3,000. already borne its first fruits, with the identification of new genes.

“The diseases we are studying may be caused by the alteration of over a hundred genes,” And what about the future? “We will be able to says the specialist. “We could therefore see develop customised therapies according to the 100 patients with the same disease without affected gene,” says Carlo Rivolta. “As soon as seeing common links in their DNA.” To help we have identified all the genes that could cause them, Carlo Rivolta and his colleagues currently the disease, we will have to find the answer to have two approaches at their disposal: technothe question: what is the common mechanism logical advances and the networking of their whereby so many different DNA defects can results thanks to the “Transvision” project set cause the same disease? Once we have found up by Francine Behar-Cohen, medical director this mechanism, we will also have found a poof the Jules Gonin Eye Hospital in Lausanne. tential therapeutic target for all who suffer from “Transvision is a multidisciplinary network the disease.” It’s a long path that the “Transvision” which brings together INSERM, the eye hospital scientists will have to tread in the years to come. and its researchers,” she says. “We also have “There is only one multidisciplinary network partners from the CHUV and EPFL.” Clinicians – like ours – for getting there,” says Francine and geneticists have their roles clearly cut out Behar-Cohen.

TO read

Researchers’ portraits on www.invivomagazine.com

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nominations

Unlocking sleep

Mathevet PATRICE POSITION Chief of the Gynaecology Service

Pulmonologist Raphaël Heinzer and neurologist José HabaRubio both work at the Centre for Investigation and Research in Sleep at the Lausanne University Hospital. They teamed up with journalist Elisabeth Gordon to write this little 11-chapter book that reveals a few secrets about the activity which, after all, takes up one-third of our lives. Why do we sleep? What disorders can disrupt sleep and how can we prevent them? Featuring short paragraphs, graphics, real-life accounts, advice for quality sleep, a test and illustrations, this book answers the most commonly asked questions about sleep and sleep disorders. BT

Professor Patrice Mathevet, 53 years old, pursued his studies in Lyon.

While working for 13 years as an assistant to Professor Daniel Dargent in the Gynaecology Service at Edouard Herriot Hospital, he became specialised in the treatment of gynaecological cancers. During two periods spent at the MD Anderson Cancer Centre in Houston, Texas, in 1992 and 1998, he was able to study the spreading of cancers, thus adding a biological approach to his clinical research.

LAST NAME

FIRST NAME

publication

READ

FIRST NAME

Professor Raymond specialises in cancers of the digestive system and is also an expert in molecular pharmacology and early nominations drug development.

LAST NAME Wildhaber These skills enable FIRST NAME BARBARA him to recommend POSITION Chief of the Paediatric the application of “smart medicine” Surgery Service in cancer treatment, based on targeted medications. This approach Originally from Aargau, Barbara will be combined with immunoWildhaber studied medicine at the therapy treatments developed at the University of Zurich. In 2007, she CHUV by Professor George Coukos, went abroad to Paris for a year for so as to treat the whole ecosystem further training in hepatobiliary in which cancer cells proliferate. surgery and paediatric liver transplantation at the Bicêtre University Hospital. She then returned to Switzerland and took over the position of chief of service at Geneva University Hospitals. The awardee of several research grants, Barbara Wildhaber is also president of the Swiss Society of Paediatric Surgery.

CEMCAV, DR

“J’ai envie de comprendre... le sommeil”, published by Médecine et Hygiène, 2013

Raymond ERIC POSITION Chief of the Medical Oncology Service LAST NAME

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migration

Stéphane Morandi tells us about his year abroad at Oxford.

Why did you decide to go abroad?

With Switzerland poised to introduce involuntary outpatient psychiatric treatment, I wanted to spend my year abroad in a country that had experience in this area, namely the UK. I met with Prof. Burns, an authority in the field and chair of social psychiatry at Oxford, during one of his visits to the University of Zurich in 2011. We reached an agreement, and I was to join his research team the following year. The Vaud Public Health Service was very interested in my project and supported me financially, as did the CHUV. What were your impressions upon arriving at Oxford?

The Department of Psychiatry at the University of Oxford is made up essentially of researchers.

Unlike in Switzerland, there aren’t many people who combine research with clinical work. I also noticed that, despite the financial crisis, the UK continues to invest heavily in research in order to maintain its international stature. But once you become integrated, you can get in touch with the leaders of other projects. I also received lots of support from my superiors in Lausanne, who helped me prepare for my return and the next stage of my career.

Morgane rosseti

It sounds like you had a positive experience.

Definitely. I was able to work with world-renowned professionals in my field and publish several

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last name

Morandi

first name

Stéphane

with the chuv since 2006 TITle Associate physician, Community Psychiatry Service

articles. Living outside of Switzerland allows you to broaden your outlook. For instance, I took advantage of my time abroad to contact the public health offices in every Swiss canton to learn about local practices regarding involuntary psychiatric treatment. I wouldn’t have been able to do so if I had to manage the service at the hospital and tend to my usual patients. As for my family, it was a wonderful experience. My kids, 4 and 7 years old, didn’t speak one word of English before we left. Now they’re fluent. My wife also took classes that the university offered to researchers’ spouses.

There was something in it for everyone! ⁄ BT

BACKSTAGE MAP OF HEALTH VALLEY The illustrator Steebz created the map of Western Switzerland (p. 6) in several steps.

This rough hand-drawn sketch allowed him to lay out all the elements that symbolise Health Valley. The “In Vivo” editorial staff decided which buildings to show on the map.

THE MAKING OF “In Extenso”

DR

The “In Extenso” infographic supplement on dreams was produced through the joint efforts of journalists Céline Bilardo and Benjamin Bollmann, infographist Thibaud Tissot (below) and illustrator Emmanuel Romeuf.

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CONTRIBUTORS

Céline Bilardo

dr, Gilles weber

Journalist Céline Bilardo is new to the LargeNetwork team. She met with many different people for this issue of “In Vivo”: Hans Wallstén, inventor of the stent (p. 11); neuroscience researchers in the Lake Geneva region (p. 8); and specialists on the issue of giving blood (p. 38). She also contributed to “In Extenso”.

Eric Déroze For this issue of “In Vivo”, Eric Déroze, photographer at the CHUV’s Medical Teaching and Audiovisual Communication Centre (CEMCAV), took the portraits of Thierry Buclin (p. 48), Carlo Rivola and Francine Behar-Cohen (p. 74).

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Sabrine Elias Ducret

Thibaud Tissot

Paule Goumaz

Sabrine Elias Ducret is an image researcher at LargeNetwork.

She holds a visual communications degree from HEAD and is in charge of organising the magazine’s photos and illustrations.

Thanks to her work searching through databases of scientific images, the magazine is filled with engaging visuals.

Graphic designer Thibaud Tissot was in charge of the artwork for the “In Extenso” infographic supplement.

Originally from Chaux-de-Fonds, he now co-manages graphic design agency Onlab in Berlin with Nicolas Bourquin. The two men have co-published “Data Flow 1” and “Data Flow 2”, which are standard reference works in the field of infographics.

Paule Goumaz interviewed Buddhist monk Matthieu Ricard (p. 30). This Sydney, Australia native worked for the Swiss national exhibition Expo.02. She joined the Lausanne University Hospital in 2003, where she works as a writer and manages various web projects for the institution.

In Vivo

Magazine published by the Lausanne University Hospital (CHUV) and the news agency LargeNetwork www.invivomagazine.com

PUBLISHER

CHUV, rue du Bugnon 46 1011 Lausanne, Switzerland T. + 41 21 314 11 11, www.chuv.ch redaction@invivomagazine.com Editorial and graphic production LargeNetwork, rue Abraham-Gevray 6 1201 Geneva, Switzerland chief editors T. + 41 22 919 19 19, www.LargeNetwork.com Béatrice Schaad and Pierre-François Leyvraz Project manager and online edition

Bertrand Tappy Thanks to

publications managers

Gabriel Sigrist and Pierre Grosjean

project manager

Alexandre Armand, Aline Hiroz, Anne-Renée Leyvraz, Melinda Marchese Anne-Marie Barres, Anne-Marie Vuillaume, Brigitte Morel, Cannelle Keller, Céline Vicario, Christian Sinobas, Graphic design managers Christine Geldhof, Deborah Gonzales, Denis Orsat, Sandro Bacco and Diana Bogsch Diane de Saab, Elise Méan, Emilie Jendly, Enrico Ferrari, Fiona Amitrano, Gilles Bovay, Jeanne-Pascale Simon, Jocelyne Bouton, Katarzyna Gornik-Verselle, editorial staff Laure Espie, Laurent Meier, Lauriane Bridel, LargeNetwork (Benjamin Bollmann, Céline Bilardo, Stanislas Cavalier, Sophie Gaitzsch, Manuela Palma, Marie-Cécile Monin, Marité Antoine Harari, Benjamin Keller, Serge Maillard, Melinda Marchese, Bartek Mudrecki, Sauser, Massimo Sandri, Muriel Cuendet-Teurbane, Thomas Pfefferlé, Jean-Christophe Piot, Geneviève Ruiz, Daniel Saraga, Julie Zaugg), Muriel Faienza, Nathalie Jacquemont, Nicolas Paule Goumaz, Bertrand Tappy Jayet, Odile Pelletier, Pauline Horquin, Philippe Coste, Philippe Dosne, Serge Gallant, Sonia Ratel, Stephan Studer, Stéphane Coendoz, iconographic research Stéphanie Dartevelle, Thuy Oettli, Virgnie Sabrine Elias Ducret and Olivia de Quatrebarbes Bovet, Valérie Blanc et le Service de communication du CHUV. Images CEMCAV (Eric Déroze, Heidi Diaz, Patrick Dutoit, Philippe Gétaz, Morgane Rossetti, Gilles Weber), Joëlle Flumet, Khuan+Ktron, Benjamin Schulte, Dom Smaz/Rezo, La Tigre

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Image created for “In Vivo” by The Face Research Lab of the Institute of Neuroscience and Psychology at the University of Glasgow. The laboratory’s research on face recognition is funded by The Economics and Social Research Council (ESRC) and The European Research Council (ERC).

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PCL Presses Centrales SA 17’000 copies in French 3’000 copies in English The views expressed in “In Vivo” and “In Extenso” are solely those of the contributors and do not in any way represent the views of the publisher.

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No. 2 – MARCH 2014

The New Era Of

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IN EXTENSO Dreams decoded In Vivo No. 2 – March 2014

social networks / ELECTRONIC HEALTH RECORDS / biobanks MATTHIEU RICARD Cultivating altruism GIVING BLOOD Overly strict standards PHARMA Drugs too can die Published by the CHUV www.invivomagazine.com IN EXTENSO DREAMS DECODED