The crowd will see you now

THAT people scour the pages of the world wide web searching for answers to medical problems is well known. Indeed, doctors label the most diligent seekers of online medical information “cyber-chondriacs”. Some frustrated individuals have even set up their own websites, replete with data about their conditions or those of family members, to encourage strangers to help solve “mum’s medical mystery”, or offer a cure for a particular brain cancer.

But to create a lone website in the hope that a knowledgeable passer-by may shed light on a mysterious illness is the cyber-equivalent of crying in the wilderness. To create one on which anyone and everyone can post a problem, so that anybody who might, for whatever reason, want to help knows where to go, is more like setting up a stall in a market at which buyers and sellers know where to meet. And such a stall, called CrowdMed, now exists.

The need for a “crowdsourced” service like this comes from the number of rare diseases around. The National Institutes of Health, America’s medical agency, recognises 7,000—defined as those that each affect fewer than 200,000 people. A general practitioner cannot possibly recognise all of these. Moreover, it may not be clear to him, even when he knows he cannot help, what sort of specialist the patient should be referred to. Research published in 2013, in the Journal of Rare Disorders, says about 8% of Americans—some 25m people—are affected by rare diseases, and that it takes an average of 7½ years to get a diagnosis. Even in Britain, with all the resources of the country’s National Health Service at a GP’s disposal, rare-disease diagnosis takes an average of 5½ years. Also, doctors often get it wrong. A survey of eight rare diseases in Europe found that around 40% of patients received an erroneous diagnosis at first. This is something that can lead to life-threatening complications.

CrowdMed, though, brings numerous pairs of eyeballs, each with different knowledge behind them, to every problem. Patients submit their cases and may offer a reward of a few hundred dollars to lubricate the process. The volunteer diagnosticians are students, retired doctors, nurses and even laymen and women who enjoy pitting their wits against a good medical mystery. Besides the cash, successful volunteers also get the kudos of rising in the website’s ranking system—and that ranking system is, in turn, used to filter the feedback given to patients, to try to avoid mistakes.

It works. One woman, for example, had been burping as many as 150 times a day. Two endoscopies, a laryngoscopy and an abdominal ultrasonic scan all failed to identify her problem, and eliminating wine, chocolate and gluten from her diet failed to solve it. Crowdsourcing offered a diagnosis of “supragastric belching”. That suggested treatment by a specialist called a speech pathologist, which cured her. In another case a 78-year-old man who was himself a doctor had had muscle pains in his face, upper body and extremities for decades. Over two months, 50 medical detectives reached a diagnosis of fibromyalgia. In a review that CrowdMed carried out of several hundred cases posted on the site, around 80% of patients said the suggestions proferred to them were accurate. Intriguingly, many of the best-performing cyber-diagnosticians were not those with the best formal medical credentials.

Diagnostic crowdsourcing will not have the field to itself for long, however. It faces competition from machine-based systems such as Watson, a computer built by IBM that digests large bodies of data and draws inferences from them. It will be interesting to see whether the collective wisdom of practitioners and enthusiastic amateurs prevails over an algorithmic synthesis of the world’s medical literature. Whichever emerges victorious, though, it will be better than just entering symptoms into a search engine—and it will not just be cyber-chondriacs who benefit.