When Dr Google and Dr Expert disagree
Empowered by medical internet searches, Ashya King’s parents took dramatic action. Is it a good idea to diagnose yourself? And what does it mean for the future of medicine?
Parents: Naghmeh and Brett King talk about their son and their arrest in Spain. Photograph: Denis Doyle/Getty
Devoted: Brett King with Ashya in a video posted by Ashya’s brother Naveed. Photograph: Naveed King/YouTube/PA Wire
The furore over Ashya King, the seriously ill British five-year-old whose parents removed him from medical care last week and brought him to Spain, shows the lengths some families will go to take control of health issues.
Dissatisfied with the treatment provided to Ashya, who has an aggressive brain tumour, Brett and Naghmeh King controversially took the boy from Southampton General Hospital against medical advice. They were arrested near Malaga last weekend, then released on Tuesday after British authorities withdrew a warrant under which they could have been extradited back to Britain. The couple now plan to bring Ashya to the Czech Republic for proton-beam therapy, even though doctors say this will have no benefit.
The case highlights the extent to which lay people are using the internet for advice about medical conditions, and the uses they make of this information.
Ashya’s brother Naveed spoke about their father’s online searches. “The doctors did not want to hear anything about his research, as they did not believe this information that was being given to them,” he said; the doctors considered the internet to be unreliable, he added, but it “gave him information that the doctors would not”.
Although this is an extreme case, it puts a focus on the explosion in the popularity of internet health searches. The average American spends an hour a week trying to diagnose health problems, according to one estimate, and Irish people may not be far behind.
Six out of 10 Irish people use the internet to research a health problem, according to the Health Products Regulatory Authority. Four out of 10 of us admitted to going online in an attempt to self-diagnose. Another survey, of 1,800 Irish mothers, found that 43 per cent would turn to the internet first to attempt to diagnose their child’s illness rather than take their child to a GP or pharmacist.
It’s almost instinctive to go online to search for information. But unlike looking for a hotel, or a good used car, searching for medical information can affect your health, and not necessarily for the good.
“It was horrendous, really unhelpful. It always gives you the worst diagnosis,” says Helen Rochford-Brennan of her experience of using the internet after finding out that she had Alzheimer’s disease. “There I was, back at home in rural Sligo, wondering what to do. I’d always planned to work to 65 and never thought my career was going to be cut short. Where would I turn to, once things had settled down, but the internet?”
Most of what she read was aimed at a North American audience, not at someone like her, with early-onset Alzheimer’s. “If I took everything they said for real I’d be so depressed I wouldn’t want to be on the planet.” The last straw, she says, was when she read a site that claimed that early-onset sufferers would die within seven years. “That was it, no more internet searching. I went back to my doctor, and he put me in contact with the Alzheimer Society.”
Online medical information can be a powerful partner in healthcare if used in the right way, says Dr Suzanne Donnelly, a consultant rheumatologist at Mater Misericordiae University Hospital and director of clinical education at University College Dublin’s medical school. “You can get good information on the internet, but the difficulty for the patient is to decide whether it applies to their situation.”
The thirst for learning more about our health is nothing new, she says. “In the old days you got it by chatting to other patients in the waiting room. What we’re seeing now is a logical technological extension to these sorts of conversations.”
But it isn’t just where we search online: it’s also how we search. Two-thirds of people seeking health information use search engines such as Google rather than health-specific sites. Yet few check the source and date of the information they view.
Mary Aiken is a cyberpsychologist – a specialist who looks at human behaviour in the context of our interaction with computers – and research fellow at the Royal College of Surgeons in Ireland. She acknowledges that the information patients find online can be empowering but says her research has convinced her that there are many worrying aspects to the trend towards online self-diagnosis.
“The internet is a source of valuable medical information, but it has the potential to increase anxiety in people who have no medical training when employed as a diagnostic procedure,” she says.
Researchers use the term “cyberchondria” to describe the rush of concerns people experience after searching the internet in relation to often banal symptoms. Most of us have been there: you feel a mild pain in your head and next thing you’re reading an internet article about brain tumours. For most of us the result is unnecessary anxiety. In more extreme cases, Aiken says, an imagined physical condition can end up as a very real mental-health disorder.
The reasons this is happening are both technological and psychological. The algorithms that search engines use rank sites according to historical click-through data. The highest-ranking results are the most popular searches, not necessarily the most relevant ones.
Yet people associate search rankings with likelihood. And every time we click through to that article about brain tumours when we feel a headache, we are contributing to the likelihood that others will do the same.
Microsoft took a closer look by surveying 500 of its staff. It found that a search term such as “headache” was as likely to produce a result of “brain tumour” as it was to produce one of “caffeine withdrawal” – though, thankfully, the latter is a far more likely cause. Similarly, a search for “muscle twitching” threw up far more references for motor neuron disease than was justified by its prevalence.
As a specialist in arthritis, Donnelly frequently sees patients referred by GPs with “bone pain”. Many will have googled the term and concluded that they have cancer, although this is an extremely rare outcome, she says.
Psychology also plays a key part in the way we process the information thrown up by search engines. The base-rate fallacy is an error in thinking that leads people who are presented with general information and specific information to ignore the former and focus on the latter. Another error, availability bias, leads us to overestimate the probability of vivid events occurring. So, presented with multiple search results focusing on serious illness, we tend to forget that the search was prompted by relatively minor symptoms and think the worst.
In some parts of the internet, greater scepticism about conventional medicine goes hand in hand with the trend towards self-diagnosis. One of the biggest health websites in the US is wrongdiagnosis.com, which, in Mary Aiken’s view, “encourages people to think that doctor doesn’t know best”.
Diagnosing illnesses when children cannot communicate their symptoms can be particularly tricky. “It is very difficult to diagnose young children. Their condition can deteriorate very quickly, and the first port of call should be the doctor,” Aiken says.
Another concern is young people’s viewing of morbid content on health, she says. This typically arises when a parent falls sick and the young person, perhaps left in the dark by their parents, attempts to remedy the information deficit by going online.
Despite the limitations of online searches, people seem to be happy with the information they get. One American study found that two-thirds of respondents who sought information on the web claimed that they had never misdiagnosed themselves. Only 50 per cent who looked for information online talked to their doctors about what they found.
Self-empowerment and curiosity partly explain the surge in online health searches, but economic factors also play a part. It costs at least €50 for a 10-minute visit to a GP, and much more for a consultation with a specialist. Given that most of our ailments are routine, the temptation to save money through self-diagnosis is understandable. With the drop in income over the recession, households are more cost conscious, says Prof Steve Thomas, a health economist at Trinity College Dublin.
“So people want to find out whether they really need to see a doctor. What’s the point in going to a GP and paying him €50 to tell you there’s nothing to worry about? People also want to be better-informed to make sure they get a good deal when at the doctor.”
Flu or Ebola?
The problem is that common symptoms are exactly that: common to a lot of ailments, some minor, some serious. “Flu-like symptoms” can indicate the onset of flu but also of Ebola.
“Patients don’t have the expertise of doctors, so they can make mistakes in self-diagnosis. That can lead to worse conditions and higher costs in the long run,” says Thomas. He suggests that the introduction of low-cost helplines, staffed by health professionals, may be the answer to help avoid unnecessary spending and illness.
The promised introduction of free GP care could have the welcome effect of encouraging people to seek expert diagnosis rather than relying on the internet as the first, and sometimes the only, port of call.
For some, self-diagnosis is only the first step. The internet has opened up new ways to procure medicines, even though it is illegal in the EU to order drugs online. You might be able to buy from a legitimate online pharmacy in the US, but your order may be seized by customs.
Last year there was a 20 per cent increase in the amount of counterfeit and illegal medicines seized by the Health Products Regulatory Authority. Many of the drugs confiscated fall into the embarrassing category that might give people pause if buying them in their local pharmacy, such as drugs for erectile dysfunction, slimming or anxiety.
“Ordering medicines online is dangerous. You have no way of knowing if what you get does what it says on the tin,” says Bernard Duggan, a community pharmacist in central Dublin.
It’s a line often repeated by pharmacists, prompting some to say, “You would say that, wouldn’t you?” But Duggan can quote examples from his own practice to support what he says. He tells of one patient who went online to order slimming tablets after a GP refused to write a prescription because they were unsuitable for people with high blood pressure. “The patient’s blood pressure went through the roof, and they ended up back at the GP, looking for medication to control it.”
Healthy browsing: sensible medical searches
Plenty of reliable health information, from basic to technical, is available online. You just have to work hard to get it.
That means not going straight to a search engine the first time you have a health concern. Search-engine algorithms throw up what’s popular rather than what’s relevant, so any first page of results is likely to contain a few turkeys.
Kate Kelly of the Royal College of Surgeons in Ireland suggests four rules to remember: – Know what you’re looking for; – Use common sense; – Don’t rush straight to Google; – Never go looking for health information unless you have something specific to look up.
“Just because a site is popular doesn’t mean it’s good quality,” she says. Before searching a site for information, find out who’s running it, what its purpose is – educational or commercial – and whether a third party is paying for it.
“There are a number of reputable medical sites to help you with health problems. They will usually point you to a doctor or an emergency department if your condition is serious,” says Stephen McMahon of the Irish Patients’ Association. “Sites run by disease groups are great for self-help and information, while reputable scientific sites should be relied upon for research results.”
The US Food and Drug Administration recommends working with specific medical sites. In the United States that means those ending with .gov, which are sponsored by the government; sites ending with .edu, which are run by medical schools or universities; ones ending with .org, which are maintained by nonprofit organisations; and scientific or medical journals.
Kate Kelly recommends sites such as nhs.uk and medlineplus.gov, which are comprehensive and independent.