My social network helped diagnose a rare disease that our doctors missed.

I called my family doctor and told him I was heading to the hospital. "I just have a Spidey sense," I said, "that he's really sick." Not a lie, but not the whole truth, either, though what was I going to say? Three of my Facebook friends think my kid has an extremely rare childhood auto-immune disorder which I just read about on Wikipedia, and since they all contacted me after I posted a photo of him on my wall, I'm going? It seemed … wrong! Reactionary. And yet as much as I wanted to be my usual mellow self, the immediacy of the Facebook feedback was enough to push me out the door.

All "collective knowledge" exists in someone's brain somewhere, just like your gmail messages exist on three hard disks in three servers scattered somewhere among the millions.

Hivemind? No. Individual mind, plugged into the hive, as a participant? Yes.

But.. there are counterpoints too: For example, this is what Kasparov said about his 1999 chess match against "The World":

It is the greatest game in the history of chess. The sheer number of ideas, the complexity, and the contribution it has made to chess make it the most important game ever played.

Many critics agree with him.

The important thing here is that no participant on "The World" team was remotely as highly rated as Kasparov on their own.

http://michaelnielsen.org/blog/kasparov-versus-the-world/

Case in point, my GF. She has been suffering for 10 years with a broad spectrum of symptoms: pain that moves around, extreme skin sensitivity, migraines, chemical sensitivity so severe that a whiff of perfume can make her sick for days. The usual recommended treatment from doctors was antidepressants or anti psychotics which make things much worse. Or go see a psychiatrist. Or maybe its fibromyalgia or some other disease du jour. Finally two doctors independently ordered MRIs that covered her from head to butt, her complete spine. They discovered a syrinx in her spine that caused arachnoiditis[1]. There is no cure, although Thalidomide(!!) may be a possible treatment. The point: persistence on the internet allowed her to educate herself about the manifestations of her problem to find the specialists that found the problem. Sadly, her problem was probably caused by an injury from having received spinal anesthesia some time back.

Another story for another time is how I had to beat the doctors at Stanford Hospital into a diagnose of malaria for my daughters even though it was well beyond the 30 day incubation period.

[1] no spiders involved at all.

From the article I read, her doctors handling of it was tenuous, at best.

To me, the idea that doctors should be able to process god knows how many patients per day, and diagnose their illnesses properly, while still keeping up to date on recent discoveries, considering that medical knowledge is changing on a daily basis, is absolute madness, like pure crazy thinking.

Of course you're going to get crazy recommendations from your friends on facebook, but do you really think its humanly possible for any general practitioner to have a "good" grasp of even 50% of the medical knowledge known to date, AND see their patient load, AND read all the latest medical journals? It is not even close to possible.

Who has all the eyeballs? Google and Facebook, and somewhat Microsoft. Ignoring all the legal landmines, this is a niche that some startup should be focusing on, a way for parents/families who have intimate and in-depth experience with rare ilnesses can interact with each other. The SME's will gladly give their knowledge for free, but no one seems to have the balls to aggregate it.

One of the important points that i think people are missing, is that family and close friends are going to be the ones who can detect the onset and severity of problems. They should inform their doctors about this (and to some extent this woman did with the "spidey sense" thing).

Doctors are not in a good position to tell how far out of the norm a child is in terms of their daily life, unless you and your child see that doctor on a regular basis. It may very well be that one's social network (especially if your social network is lucky enough to include a pediatrician and a cardiologist) who are familiar with your child may be better suited to picking between two overlapping diagnoses.

Given the prior probabilities, and no specific information or identifying features doctors are going to err on the side of the most likely symptom causing disease. In this case, if it looks like strep, and the doc has no further info, it probably is strep.

tl;dr: You know your family better than your doctor does. Your doctor knows medicine better than you do. :P

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All that said, I think it's important to note a few other things. Generalists (general practitioners, pediatricians, ER docs and the like) and Specialists (cardiologists, for instance) have different biases in diagnosing. If the author's friend had been, i dunno, a dermatologist rather than a cardiologist, she may have offered a different, and likely incorrect suggestion for diagnosis. Hard to say.

Doctors, like any other science can have biases (i do not mean that in the pejorative fashion), especially when it comes to identifying rare conditions/circumstances.

Lastly, this is really social networked medicine at it's best. Mom has a sick kid, she's snapped some photos to text to her doctor, why not post them for her friends (who have medical expertise) to look at too? As in the ideal case, the concerned friends with medical experience followed up with mom to keep abreast of changes in the kid's condition, and upon noticing that symptoms were not improving, and were perhaps getting worse, suggested that (out of an overabundance of caution) that mom needed to take kid to hospital.

In that regard, none of the behavior here is outrageous or egregious (except that her husband is a bit of a knob).

Lets take HIV for example. First symptoms of infection are usually a high fever and very sick -- like a really bad flu (after this initial spike, you can go asymptomatic for years).

So you go to the doctor with flu-like symptoms, and they give you an HIV test. Now if you haven't had unprotected sex or blood transfusion with an at risk partner the odds of you having contracted HIV is extremely low. So the general recommendation is not to test you for HIV. But you say, "I want to rule it out. Give me the HIV test." Modern medical testing is rarely 100%. The HIV test is 99% accurate, but 1% of the time you won't have HIV, but it will say you do.

So imagine a population of 1000 zero risk people who take the test. On average 10 are going to come back as HIV positive. And maybe start an HIV regimine, rather than just realizing that its just the flu, which would have gone away in another day.

The point is you try to focus on what is common first. You rule those things out first, before diving into the more obscure. This not only reduces healthcare costs, but also reduces the burden on the healthcare system, and likely improves the health of virtually everybody.

I'm no longer a bored, stay-at-home mom and I really don't do Facebook, but I still have connections to the types of communities (including some health lists) with high-ish numbers of full time moms and I do read HN. So, in theory, I could start posting links like this around and get such people here...

;-)

sounds like not that rare. Or is it rare just because doctor couldn't diagnose it?

Just an experiment - googled "Face swelling" and the first page of the first organic result has

"If you experience facial swelling accompanied by difficulty breathing, hives, intense distress, fever, redness, or warmth, seek immediate medical care (call 911)."

I see how the following logic also may be applied - they went to ER on the 3rd something day as a result of FB suggestions, while the search on Google directs to 911 immediately. So did the FB help? Or may be wasting time on FB diverted the time and attention from the more effective information search activities?

She was mailing images to her family doctor whilst awaiting test results and had already been given a diagnosis and treatment. The mother was clearly questioning the diagnosis. The use of one of the images that she'd sent to the doctor was incidental, a progress report for family and friends. She probably didn't want to use the phone for fear of missing the doctor's call but still wanted to let people (her mother is mentioned) updated.

Could you say how you feel the article is sensationalised?