Text: Julie Zaugg
Photo: Gilles Weber

Today’s well-informed patients

Thanks to the Internet, patients are now better informed and take a more active role in their care. But the World Wide Web can also cause anxiety or encourage dangerous behaviour.


Thomas Bischoff, a specialist in family medicine, has recently retired from CHUV.

That bloody cough, and those awful headaches, just won’t go away. And the doctor says he can’t see you before next week. So you grab your smartphone and type your symptoms into the search engine in the hope of finding out what’s wrong with you. In Switzerland, 64% of Internet users have already gone there, reports the Swiss Federal Statistical Office. In the United States, the percentage is as high as 80%.

Free, anonymous and available 24/7, the Internet is an attractive option for patients who want information. The vast majority of searches are done using search engines such as Google. “Google now produces search results not only based on key words but also on a question format,” says Marcel Salathé, a researcher at the Swiss Federal Institute of Technology in Lausanne, who analyses how diseases are discussed online. “It also provides more and more information directly in the search results, rather than simply sending users to other sites.”

In the spring of 2016, Google introduced Symptom Search. This new feature lets users type their symptoms into a search engine and comes up with a set of “condition cards” describing the potential health issues that could match, along with a list of treatments and advice as to whether they should see a doctor.

Patients go to medical search engines such as www.moteur-de-recherche-medical.org, specialised websites like WebMD in the United States, the French site Doctissimo and the Swiss portal Planète Santé, and biomedical literature tools such as PubMed. They also check the websites of public health agencies, such as the Swiss Federal Office of Public Health, university hospitals
or the U.S. National Library of Medicine (MedlinePlus), and they consult health associations platforms, for example the Swiss Diabetes Association. A number of questionnaires are also available online to find out if you drink too much alcohol, suffer from sleep apnoea or risk developing osteoporosis or a cardiovascular disease.

This profusion of information improves patient care. “If a patient goes to see a doctor having already picked up some information online, the person will get more out
of the consultation and better understand what the doctor is talking about,” says Jean Gabriel Jeannot, the doctor who writes articles and gives advice via the website medicalinfo.ch.

That can be crucial for patients with chronic illnesses. “These patients generally have to have long, complex treatments,” says Bertrand Kiefer, who heads up Planète Santé. “So it is especially important for them to understand all the aspects of their illness and show that they are taking an active role in their care.” For example, diabetic patients must understand how to calculate and check their blood sugar levels.

In Switzerland, 64% of Internet users have already gone there, reports the Swiss Federal Statistical Office. In the United States, the percentage is as high as 80%.

Thomas Bischoff believes that access to information leads to better care.

iv How has the Internet changed the doctor-patient relationship?

tb It has given patients control. They no longer blindly obey their doctor. When a treatment is prescribed, the patient knows why they should take it. It’s a conscious choice. That has given rise to a relationship of equality between patients and doctors, like a partnership in managing the disease.

iv How are doctors handling it?

tb Patients sometimes have information about their
disease that the physician doesn’t even know about. They may be aware of a new therapy before their doctor or even disagree with the diagnosis. That can destabilise doctors. But a better-informed patient is always a good thing.

iv Can a patient really self-diagnose their condition online?

tb Those cases are rare, but do occur. One of my
patients, in his 30s, came to see me complaining of chest pain. After searching online, he was convinced
he was suffering from a pulmonary embolism or
an infarction. I reassured him immediately, telling him that, at his age, it was unlikely. One week later, he
came back to see me, and he had indeed had a
pulmonary embolism.

Some chronic diseases, such as cardiovascular conditions, are silent illnesses with no symptoms. “If we want a patient to stick to their treatment, we have to make sure they are aware of the risks they are taking. And for that, the Internet is a valuable tool,” Jeannot says. Patients can also use the

web to better understand their diagnosis. “The doctor doesn’t always have the time to explain all the symptoms
of a disease or all the side effects of a drug,” says Dr Thomas Bischoff, a specialist in family medicine who recently retired from the Lausanne University Hospital (CHUV). Studies have also shown that patients only remember 40% to 80% of the information given during a doctor’s appointment.

Rare diseases are another instance where the Internet is particularly useful. More than 6,000 have been listed, and new conditions are added nearly every day. “It’s impossible for doctors to know them all,” says Frédéric Barbey, associate physician at CHUV and co-director of
the website www.info-maladies-rares.ch. With rare diseases, information found online can even help the doctor diagnose the problem. Dr Barbey recalls a patient with hypermobility of the joints who self-diagnosed his condition using the website.

Patients suffering from rare or serious diseases, such as cancer, go online to seek support and break out of
their isolation. “There are many online communities
and Facebook groups where patients can talk to one another, share their expertise with other patients or
discuss the side effects of their treatment,” Jeannot adds. These virtual communities can even develop into lobby or interest groups. “Some have even raised funds for research or influenced political decisions,” Salathé says.

A number of studies have looked at the impact of the Internet on the relationship between doctors and patients. And it can be negative. One study conducted at a hospital in São Paulo in 2014 reported that unnecessary tests are sometimes performed and clinical visits are extended because patients don’t trust their doctors. But the vast majority of patients trust their doctor more than
the Internet. A poll conducted by the University of Bordeaux in 2015 found that only 6% believe they can get better answers to their questions online.

The study also highlighted how little trust health care professionals have in the Internet. Most of them warn their patients to be careful when using the Internet. The data presented on a platform such as Planète Santé are verified, but not necessarily on other sites, including Doctissimo. “The order in which search results are displayed on the Internet does not reflect the quality
of the information but its ranking,” Kiefer points out. The websites that come up first are the ones that generate the most clicks—mainly due to the shock value of the information they post—or include the most links.

Even worse, many patients click on links to ads listed at the top of the search results page. These ads are designed to sell them dubious or even illegal treatments. And the more they search online, the more of them they see. “Search engines store all your search requests and use them to select which ads to display,” Salathé says. “There’s no medical confidentiality on the web.”

This misinformation can have disastrous consequences. Some patients will choose not to see a doctor, thinking they can treat themselves based on the information they pick up online. At the other end of the spectrum, others start panicking after reading some of the alarmist information that is so easy to find. “On the Internet, a headache can turn into a brain tumour in a matter of three clicks,” Dr Jeannot says. This 21st-century condition even
has a name—cyberchondria. ⁄



Most common diseases in online searches

Chronic diseases

Patients suffering from chronic diseases are among those who use online resources the most. They

mainly go online for information about their treatment and how to manage their symptoms in the long term. With the new self-monitoring tools available (apps, smart wristbands, etc.), these patients can provide their
doctor with a plethora of information, including their blood pressure, cholesterol level and blood sugar levels.

Rare diseases

People with rare diseases often turn to the web to find information. The Swiss platform www.info-maladies-rares.ch, jointly managed by CHUV and Geneva University Hospitals, offers patients a database of rare diseases and links to organisations specialising in each of these diseases. A number of online support groups exist where patients can discuss their diagnosis and share information on the latest treatments.


This serious disease, which can develop
over several years, generates many online searches. A whole host of blogs and forums devoted to this disease are available, including “Après mon cancer du sein”, “Fuck my cancer“ or the website Seinplement Romand(e)s”.

The Internet can
also play an active
role. The French organisation Seintinelles uses the web to connect researchers and patients willing to participate in breast cancer studies. An app developed one year ago by a physician from the Cancerology Centre in Le Mans asks lung cancer patients to answer 12 questions every week. This helps their doctor determine if there is any risk of relapse. “It has already reduced the number of deaths by 27%,” Jean Gabriel Jeannot says.

Childhood diseases

Parents, generally stressed about their children’s health,
are avid users of
the Internet. In
Switzerland, the website www.monenfantestmalade.ch, is designed for them. “We want to offer them guidance before and after a consultation and prevent unnecessary visits to A&E,” says Alain Gervaix, a professor in the Department of Paediatrics at the University of Geneva and co-author of the site. The platform answers simple questions, such as “My child has been burnt. Should I see a doctor?” or “My child has vomited his medication. Should I give him another full dose?” It also provides fact sheets on the most common diseases. “Last winter, many parents came to us after reading about bronchiolitis because they had recognised the symptoms (especially rapid breathing) in their child,” the physician says.