There is an interesting article in The Economist describing CrowdMed, a website that uses crowd sourcing to help diagnose rare diseases.
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.My wife last year went through the process of getting a diagnosis for a rare set of symptoms, and it took a while, involved many tests, and ultimately a referral to a specialist. I am impressed by the problem of diagnosis for such conditions, and I think crowd sourcing could be useful in the right hands.
I would caution that it could be dangerous as well. I think that one should use CrowdMed only under the care of a physician, and should discuss possible diagnoses with the physician.
Still, I find the idea of a website providing an alternative source of ideas to be discussed with one's doctor to be very interesting.