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Search engine bias could make you a victim of cyberchondria. Image Credit: Shutterstock

When my father was complaining of abdominal pains a few years ago, the doctor diagnosed him with indigestion and advised taking it easy. But when the pains wouldn’t go away, I put my amateur-medic’s cap on and settled down at the PC. Several searches and a lot of cross-examination later, and I had Dr Google’s diagnosis: gallstones. My father returned to the real-life doctor with Dr Google’s finding and, sure enough, tests revealed that was exactly what he had. Victory for Dr Google!

I’m far from alone in taking matters into my own hands – Dr Maria Alonso of Dubai Herbal and Treatment Centre estimates that at least 80 per cent of the patients she sees in the UAE use the internet to get information about their symptoms, treatment and medication. “It’s about the availability of information,” she says. “It’s now so easy to access the internet that we are used to being able to find out about anything, at any time, wherever we are, even from our smartphones while we’re by the pool.”

But this kind of self-diagnosis is not only a bit presumptuous – the consequences can be disastrous, says Dr Saliha Afridi of The LightHouse Arabia in Dubai. “Knowledge that is acquired recklessly and used irresponsibly can be very dangerous,” she says. “If it was that easy to diagnose someone, then doctors would not have the years of training that they do.”

A new study by health brand Balance Activ has found that one in four British women has misdiagnosed herself on the internet. While symptom-surfing may sometimes provide a correct diagnosis, real doctors agree that incorrect information and people misunderstanding websites can result in patients suffering unnecessary anxiety as their online searches throw up terrifying worst-case-scenario diagnoses for what could be relatively innocent symptoms. Dr Laurence Buckman, chairman of the British Medical Association’s GPs Committee, warns: “If you just Google something, you’re going to get a range of responses, some of which will be rubbish. If you feel something in your chest you’ll end up thinking you’re having a heart attack, and you’re probably not. Sometimes people come up with quite strange diagnostic leaps which aren’t logical, and occasionally I look on a site with a patient and they’ve simply misread it.”

Dr Alonso agrees. “Not everything you look up on the internet is written by an expert,” she says. “Anybody can write up about any topic, so the value of the information you get is not always reliable. For a non-expert it is almost impossible to assess how critical or important some of the symptoms are, because you need to see that in the medical context and confirm it by medical tests. For example, if you read up about fatigue, you can find all sorts of diagnoses, from anaemia, to thyroid disease, to cancer. How is a layperson supposed to decide which diagnosis is the right one for her or him?”

The Balance Activ study of 1,000 women revealed that the symptoms most likely to prompt self-diagnosis are vague ones, including sleeping problems, headaches and depression. Muscle pain, stomach cramps and fatigue also lead women to consult Dr Google, and a fifth of them have at some time suspected they had a serious disease – the most common false alarm being breast cancer. Other illnesses that women most often misdiagnose themselves with are other cancers, high blood pressure, asthma, arthritis, depression and diabetes.

Statistical bias

It’s this kind of self-diagnosis that means most of us can relate to that lurching, sinking feeling you get when an online search on your headache or twitching eye results in a horrifying rash of potentially life-threatening diagnoses. But it’s not just a case of us being morbid or suffering from net-induced hypochondria – or ‘cyberchondria’ as it has been dubbed – it’s a mathematical fact that Dr Google is more likely to produce panic-inciting results than less sensational, but statistically more likely, possibilities. A study by Eric Horvitz and Ryen White, scientists at Microsoft’s research division, found that 25 per cent of the results achieved by a web search for “headache” point to a brain tumour as a possible cause – a significantly higher proportion than the actual incidence of brain tumours, which develop in fewer than one in 50,000 people.

“The problem starts with bias,” Horvitz told The Independent newspaper in the UK. “Nobody is excited to write about caffeine withdrawal and its role in headaches, but brain tumours – that’s much more interesting. Search engines aren’t savvy about this bias – they are programmed to generate results relevant to the query, not the person making it.” Unaware of the disproportionate level of attention given to scary diseases, people frequently relate search rankings with likelihood.

“Most people assume that almost any symptom equals cancer, the disease they’re most scared of,” agrees Dr Buckman. “There are some people who are already anxious, and the internet fuels that, so looking it up is probably a mistake for them. They come in very distressed because they think they’ve got cancer, when in fact they haven’t – most symptoms do not equal cancer.”

Whether you are anxiety-prone or not, there’s no doubt that the ever-expanding source of information from the myriad sources on the internet feeds our fears, often resulting in unnecessary turmoil.

“It’s very hard to reassure people when they’ve read it in black and white on the internet,” says Dr Buckman. “They think it must be true and we have to persuade them that’s not the case.”

That persuasion can mean the time and expense of blood tests, X-rays and scans that may not have been necessary if the patients weren’t so worried by what they had read online.

Limited positive benefits

However there are some benefits to looking up symptoms on the internet, explains Dr Buckman, but it’s connected to when you do your searching.

“I think most doctors are quite pleased when people look things up on the internet after they’ve seen them,” he says. “But what they’re not pleased about is when a patient comes with a sheaf of papers, having already ‘worked out’ what’s wrong with them before they’ve seen a doctor. Then the consultation isn’t about their illness, but about what they’ve found on the internet and you end up with the doctor trying to prove that the internet’s wrong, which can be extremely time-consuming.”

For services that still have a stigma associated with them, such as mental-health services, people may not want to go to doctors owing to societal or cultural issues and thus the internet feels like their only source of information, points out Dr Afridi. “But if you are truly concerned about something, it is important to seek a doctor who is qualified to make a thorough diagnostic assessment,” she urges. “If you are sceptical about the diagnosis, then get a second or third opinion.”

In a nutshell, it’s only worth looking up symptoms online if you know your problem’s minor, or you’ve already been diagnosed by a doctor and want more information. If you can’t get a quick appointment, ask for a telephone consultation rather than just self-diagnosing on the internet. Dr Buckman points out that if there were something wrong with your car, you’d take it to a garage rather than diagnosing and fixing it yourself. “It’s the same with your health,” he says. “A GP needs you to tell him your symptoms carefully, and together you’ll work out what it might be, rather than starting off with an internet diagnosis which is very likely to be wrong.”

Bad medicine

The perils of treating a condition with the help of Dr Google mean that the medical profession is unanimous in its advice that people always consult a real-life doctor in the first instance.

The Balance Activ study found that searching for symptoms online and then self-medicating has led a tenth of the UK’s women to endure unpleasant side-effects as a result of misdiagnosis.

Pharmacist Leyla Hannbeck, spokesperson for the National Pharmacy Association, says Googling symptoms and treatment can be dangerous, particularly when people on health chat forums recommend certain medications. “You read people’s comments about particular symptoms, and they often say take this or that, which is dangerous because these people probably don’t know anything about medicines,” she points out.

“We’re quite concerned about it – it’s one thing to Google your symptoms, but quite another to start treating them,” she adds.

She stresses that even if someone does Google their symptoms, any treatment should be discussed with a health-care professional. People can go to a pharmacy without an appointment, describe their symptoms to the pharmacist – in a consultation room if preferred – and the pharmacist will either advise on the correct treatment or suggest a patient sees a doctor if necessary. “If you speak to a pharmacist, you’re talking to someone very knowledgeable,” says Hannbeck.

“Pharmacies are very accessible – you just need to walk into one to get the information you need, rather than going on the internet trying to work out what your condition is. It’s very worrying when people start playing with their health.”

Are there any sites that could be useful?

“Once you have a diagnosis, I recommend using sites such as MayoClinic (www.mayoclinic.com) or professional association sites like Apa.org; Autismspeaks.org or Kidshealth.org to develop your understanding,” says Dr Afridi. “Avoid websites that don’t publish peer-reviewed research and information. Websites like Wikipedia.com are helpful but that information is written and edited by users of that website so it may not always have been cross-checked thoroughly at the time that you are reading it.”

Dr Buckman advises patients to use only trusted sites run by recognised bodies such as the NHS in the UK, or established international charities. And beware of commercial sites, he warns. “Otherwise you could end up with some clinic in America which puts boot polish on your knee and says it cures multiple sclerosis or whatever your problem is. They’re usually selling that particular make of boot polish, and that really isn’t helpful.”

Additional text: Lisa Salmon, PA