Cyber-diagnosis: Should we Google symptoms?

After news that a young woman died when a GP rejected her cyber-diagnosis, Kate Hilpern finds out how much Googling the doctors order

Worried well: looking up symptoms online has changed the medical profession (Jason Alden)

"Stop Googling your symptoms." It's pretty futile advice in age of the internet, when the vast majority of people with a health concern start by typing it into their computer. It's also potentially fatal advice, as the case of teenager Bronte Doyne revealed this week. The teenager, who was suffering from a rare form of liver cancer, begged doctors to take her seriously after she found worrying details about her condition online. But they ignored her and in March 2013, the cancer did just what the internet said it would – it killed her.

The case, concluded Keith Girling, deputy medical director at Nottingham University Hospitals NHS Trust, has put the spotlight on how the availability of information online can challenge the way medics respond to patients, who are increasingly well informed.

"The days of doctors being patronising and offering one-way communication should be long over," believes GP Clare Gerada, who is all for patients turning to Google. "The internet has given patients the opportunity to be far better informed about their own health and I for one welcome that because it makes them much more likely to look after themselves and to seek medical advice when they find something is wrong." The rarer the condition, the better the internet is, she adds. "We tend to do all the tests for serious conditions, but not always the rarer ones."

But all this comes with an important caveat, she says, and that is that you can never replace clinical judgement. "This morning, I had three patients, all with exactly the same symptoms and each had a different diagnosis. You need the medical professional to translate the medical knowledge to the individual patient."

GP Dr Pauline Brimblecombe agrees that GPs should embrace the Googling of symptoms. "I find these patients much easier to work with. The relationship somehow feels more equal and I don't have to spend so much time explaining everything. I often learn something new myself if they pass on interesting resources to me. Even when they come into the surgery misinformed, at least I can reassure them."

But while the best online information is helpful, accurate and evidence-based, some is inaccurate, misleading or just plain nonsense. "A patient once gave me a whole volume of articles printed off the internet that he'd actually leather bound. The note said, 'I know you don't have much time to research my condition, so I've done it for you.' But much of it was utter rubbish." reports GP Dr Rob Hicks.

Then there are those who become so terrified about what they find online that they put off a visit to the GP altogether. "On balance, I think people are more likely to go to the doctor if they find something online that worries them, which is particularly good news for groups like men, who we know can often put off visiting the GP," says Dr Hicks. "But there still remains a group that goes the other way."

This group often includes so-called cyberchondriacs – those who Google symptoms as simple as "headaches and nausea" or "twitching muscles", only to find their concern turn to blind panic as they spot links to websites on rare and untreatable diseases. Research shows that these normally rational internet users latch on to the worst diagnosis and even if they visit the GP, they often remain convinced.

"I do see some people who don't believe my reassurances and that can be quite a difficult consultation. Also, none of us is infallible," says GP Dr Nicola Kemp. More often than not, though, she says the Googling of symptoms is positive. "Even though it means GPs spend more time seeing the worried well, if we can reassure them, then that has to be a good thing."

Web surfers should remember, though, that anyone can build a website, and that a lot of online medical information is out of date. Stick to trusted websites, such as the NHS, Patient UK, Webmd.com and the search engine Medhunt. And remember that search engines are programmed to generate results relevant to the query, not the person making it, adds Dr Kemp – meaning that if you search "headache", and "brain tumour" appears near the top of the page, you shouldn't think, "Oh my God, that's it, I'm going to die."

Don't be frightened to tell your doctor when you've found something online that's concerned you, adds GP Dr Shalini Chopra. "If you are upfront, then the doctor can deal directly with your concerns."

Finally, says Dr Hicks, save the bulk of your research until after you have a diagnosis. "Possible treatments, as well as tips and advice for living with the longer-term condition, are the most helpful aspects of the internet when it comes to health. In fact, as a doctor, I find myself increasingly advising my patients to use them, particularly the support groups' and charities' websites. Google away, I say."