Careful, nocebo effect! What you should keep in mind when you’re searching for health information online

When we don’t understand something, we generally ask the internet first, including when it comes to medical matters. Indeed, the HINTS Germany Study from 2020 and 2022, which surveyed health-seeking behaviour in Germany (https://www.stiftung-gesundheitswissen.de/projekt-hints-germany) found that three quarters of all Germans have generally sought out specific information on health-related topics at some point, mainly in their doctor’s practice but also in the media, and predominantly online (Dr Google).

The survey also showed that trust in the information provided in digital and print media ranks far behind trust in the information provided by doctors. This is due not least to the quantity, diversity, and also the contradictory nature of the digital information jungle.

So how can regular people filter out good health information, that is appropriate for them, from the vast amount of complex specialist information as well as dubious sources on offer? And without falling prey to scaremongering or overexaggeration, which triggers anxiety and thus increases the risk of nocebo effects? The nocebo effect is the opposite of the placebo effect. In its original sense, the term refers to the worsening of a patient's condition after the administration of a placebo medication. In a broader sense, it includes the effects of negative expectations of a drug or treatment, such as doubts about its effectiveness.

It's important to be aware of the pitfalls of the internet when you’re trying to find accurate medical information from a reliable source, and to learn how to research properly. Our guidelines can help you with this.

The internet offers a lot of health information, but please don’t just read the headlines

Anyone who is interested in health topics can find plenty of information in classical print media or on TV or radio health shows from public or private broadcasters. On the whole, this information is presented in a robust manner, often dominated by current events (COVID pandemic!) or draws on exciting new research findings. However, the press often like to “sell” such matters with enticing, sensational headlines like “Cure at last?” or “Medical miracle!”. This disappoints the people who are affected, angers doctors and other medics, and teaches us all that we shouldn’t just read the headlines.

Two thirds of the people consult Dr Google

When we are looking for specific information about a symptom, an acute illness, a diagnosis, a medication, or a clinical picture, we tend to go on the internet. “A quick Google” has become a part of everyday life, with search engines acting as a universal reference for all of life’s questions. Already in 2022, according to the OECD 60% of individuals aged 16‑74 in the 32 OECD countries use the internet to seek health information. In Germany, searches for information predominantly took place on Google at this time. Around half turn to video platforms for health information, mainly YouTube, and almost a quarter consult social media. The first port of call for many people is the online encyclopaedia Wikipedia.

Searching for health information on the internet before and after visiting the doctor

In January 2023, the digital association Bitkom presented a survey about how Germans over the age of 16 use the internet for health questions. They found that 62 percent of the people surveyed google their symptoms before visiting the doctor, and 63 percent go back online after the doctor’s visit, primarily in the search for possible treatment methods.

Almost a quarter stated that they couldn’t remember all of the details from a doctor’s consultation, and sought to fill this gap with the help of the internet. Fifteen percent stated that they didn’t understand the doctor’s explanations, and therefore researched online following the appointment. In other words: Nearly half of all patients do not feel sufficiently informed after seeing the doctor.

Patients want to check the doctor’s recommendation

The Bitcom findings confirmed the results of a study published by the Bertelsmann Foundation in 2018, which found that patients primarily turn to the internet in order to check their doctors’ recommendations and find out about alternative treatment methods. But they also use the internet to exchange views and information with other people and to seek emotional support after receiving a diagnosis. However, the survey further found that when they are actually in the doctor’s consulting room, a third of patients keep quiet about their online research. And only 20 percent of doctors encourage their patients to actively consult the internet with concrete recommendations for particular websites. This might also explain why 65 percent of respondents complain that it is hard to identify trustworthy information on the internet. At least in Germany, laypeople particularly value websites that primarily present holistic and naturopathic methods.

Scepticism is important!

People who don’t have much experience with online research might think that the best and most informative websites on a topic will be appear at the top of the search results. This isn’t the case. The first places on page 1 of the Google results cost companies a lot of money – they are marked as “Sponsored”. The rest are determined by the search engine’s algorithms. This means that the order of websites is determined by a program, and not by the quality of their contents! Companies and publishers employ entire SEO (search engine optimization) departments to ensure that their offers are as high on the list of search results as possible. Social media algorithms also prefer to push catastrophizing posts to the top because they are more likely to be clicked on and “liked”.

Searching online with a critical eye

Patients with chronic illnesses feel especially understood, and like they are in good hands, when they are among fellow sufferers. However, some self-help sites lead the patient far away from facts and research. And not every case history or individual treatment experience applies to other sufferers. Other patients’ reports about their experiences can give someone courage, but might also provoke more anxiety. So it’s helpful to have a critical eye.

On the internet, we can find very well-constructed and appealing websites from pharmaceutical companies that contain high-quality information, for instance about clinical pictures. But we have to keep in mind that these are health problems for which said companies are also offering treatments. Due to the ban on advertising pharmaceuticals, products cannot be “advertised”, so the companies are limited to providing information, but this might not describe all aspects of a treatment and its alternatives in a neutral manner. Negative aspects and potentially critical studies are unlikely to be found on these sites, and the reader needs to take this into account.

Beware of the nocebo effect through (too much) health information

Anyone looking for health information will have certain expectations, prior experiences, and attitudes. A person using the search term “medication XY side effects” may have had a particular experience in the past or a negative expectation. And the search results might then sideline the positive effects of medication XY, reinforcing the person’s fears and rejection of the medication. In this way, as well as providing information, googling also delivers the nocebo effect.

In 2020, an experiment at the Department of Clinical Psychology and Psychotherapy at the University of Cologne showed just how quickly this can happen. In the study, students were asked to spend five minutes on the internet googling symptoms of their individual everyday ailments like digestive problems, colds, or headaches. Even after such a short time, the researchers found that the students were mostly more worried about their health, and thought their ailments were less harmless, than they did before googling.

So pay attention to what you are writing in the search field, because that will determine the results you get.

Social media influences people’s perception

Ben Colagiuri is a psychologist at the University of Sidney in Australia and an international expert on the role of expectations and placebo and nocebo effects in relation to social media. Together with researchers from Australia, the USA, Great Britain and Denmark, in two studies, he examined the association between posts on social media such as X (formerly Twitter) and side effects of COVID-19 vaccinations.

The results showed that if, prior to getting their vaccination, people had been exposed to negative information about post-vaccination reactions on social media and through their personal acquaintances, they were more likely to report side effects themselves and to describe these effects as strong. The more negative posts about vaccine side effects participants had seen on various social media platforms, the more likely they were to report severe side effects after their COVID vaccination. Further details on the groundbreaking studies and an interview with Ben Colagiuri can be found here.

Does YouTube provide good health information?

On social networks like Facebook, Instagram, TikTok or YouTube, anyone can have their digital say. Besides digitally savvy experts from science and the health professions, so-called influencers also present health topics on social media, and they have a particular, not always clearly documented mission.

To manage this prolific and uncontrolled growth, at least to a degree, YouTube has introduced a mark of authenticity for health information. Since the end of February 2023, doctors, organizations, and hospitals can receive the “YouTube Health” mark of authenticity, which shows that a video was produced under medical supervision.

How can I get the right information from the internet?

The best advice when it comes to a successful internet search for illnesses, treatments or medications is to consult the sites of independent organizations, non-profit organizations, or research institutes. This ensures that there is no hidden advertising for particular medications and that the information meets scientific standards and is up-to-date. The explanations can be understood by laypeople and neither dramatize an illness nor downplay how serious it is. And: Good sites always point out that their information is not a substitute for seeing a doctor.

A reputable website explains who is responsible for its contents, how the site is funded, and how the users’ data is protected. While most visitors to a site may not be interested in this “small print”, it is nevertheless a sign of quality. This also includes a reference to the sources of the information or the provision of cross-references to further literature or points of contact.

Many reputable health portals also place value on quality logos, for instance from the Swiss non-profit foundation “Health On the Net”. This certification is given to sites that adhere to set rules, such as disclosure of funding, clear separation of advertising and editorial content, and transparency.

The quality logo from the German “Aktionsforum Gesundheitsinformationenssystem” (afgis) [Action Forum Health Information system] employs similar criteria to medical websites. To be allowed to display this logo, sites also need to be user-friendly and straightforward to understand.

For the UK, if the so-called PIF TICK is displayed on a website, the reader can be sure that the information is trusted, evidence-based and easy to use and understand. To gain the PIF TICK, information production must meet 10 criteria, which are assessed by the Patient Information Forum.

The following eight tips should help you to find reputable and accurate information about your health on the internet:

1. Who’s saying it? Good websites will tell you who is operating and funding them, will disclose their sources, and will mark adverts clearly. If you’re feeling brave, you can also take a look at the original studies if they are available. The studies are mostly published in English and are not easy for everyone to understand, but often, even a quick look is enough to reassure oneself about who wrote the study, when it was conducted, and what other articles about this study have been written.
2. Is the info up-to-date? Nothing ever disappears from the internet, but in medicine, a lot can change in a short space of time. For example, claims of “new treatments” or “first study findings” shouldn’t be more than two or three years old. You also need to be extra cautious when reading about “preliminary results”, meaning when studies that are still ongoing publish interim findings: These might still change once the study is completed.
3. Sensational treatment success? Always be sceptical of websites that make big promises. Check on several independent websites whether there is really something “sensational” going on and whether different media are reporting on it differently.
4. Chickenpox or varicella? When you are searching for illnesses, consider using the Latin name as well as the English one, especially if you’re looking for scientific texts. For medications, entering the name of the active ingredient will give you more relevant results.
5. Too many irrelevant hits? Make your search words more precise. If you google “back pain”, you’ll get 126 million hits. But if you search instead for “sharp pain in lower back”, the results are narrowed down to 23,000 hits – and the helpful information can be found higher up on Google.
6. Does Dr Google know best? In the search field, Google automatically suggests particular pairs of terms, as well as an extra field of “Similar questions”. This is useful, as it might help you to find the right search track more quickly and get a precise answer. After all, correct searching also has to be learned.
7. Found a helpful source? So that you can find it again later, make sure you save the site to your favourites. Or take a screenshot (a photo of the screen on your computer, tablet, or mobile phone) that you can show to the doctor at your next visit.
8. The best advice is: Ask your doctor or pharmacist for further information.