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

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

#41
post #27

Her network didnt produce this, a friend who had a kid with the same disease produced this. Stop mis-attributing individual connections as being performed by the collective. Those Nazi photographs that made the rounds recently? At the time they were heralded as a "wisdom of the crowds" moment, some great network shifting in to gear to crunch a hard problem. The case here & there are the same; it's not about the netwo…

Yes, the wisdom of the crowd is often about connecting with the right individual. One can argue that overall wisdom is always a function of speed of thought, and network effects often speed up contacting the right individual.

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/

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

#43

a) As far as I can tell from the article, her doctor was at most a couple hours behind her "social network". b) Her social network also produced "various diagnoses" which were presumably wrong. c) I wonder how often this sort of thing happens, vs. people's networks encouraging them to not vaccinate their kids, or go on a "cleanse" or what-have-you.

>"You know what?" he said, "I was actually just thinking it could be Kawasaki disease. Makes total sense. Bravo, Facebook."

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.

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

#44

a) As far as I can tell from the article, her doctor was at most a couple hours behind her "social network". b) Her social network also produced "various diagnoses" which were presumably wrong. c) I wonder how often this sort of thing happens, vs. people's networks encouraging them to not vaccinate their kids, or go on a "cleanse" or what-have-you.

So, i agree, and i disagree.

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

===========================================

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).

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

#46

Earlier quoted context omitted.

I don't think you're quite being fair. I've certainly used FB to check on someone who was ill without having to call them directly; not out of boredom but out of concern. Also simply not being involved in complex mental activity doesn't make one bored.

Concern couldn't have been the case this time, though, because people found out about the kid's illness by randomly checking Facebook. In conclusion, I find my one sentence analysis to be largely accurate.

You've done a ninja edit haven't you?

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

#47

a) As far as I can tell from the article, her doctor was at most a couple hours behind her "social network". b) Her social network also produced "various diagnoses" which were presumably wrong. c) I wonder how often this sort of thing happens, vs. people's networks encouraging them to not vaccinate their kids, or go on a "cleanse" or what-have-you.

>"You know what?" he said, "I was actually just thinking it could be Kawasaki disease. Makes total sense. Bravo, Facebook." 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…

[deleted]

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

#48

Earlier quoted context omitted.

Concern couldn't have been the case this time, though, because people found out about the kid's illness by randomly checking Facebook. In conclusion, I find my one sentence analysis to be largely accurate.

You've done a ninja edit haven't you?

No edits.

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

#49
it was inconceivable to me that complete strangers would ever fret over my child's welfare

Why are complete strangers on her Facebook? I honestly don't think her social network helped diagnose this at all. With every correct diagnoses, there are bound to be numerous incorrect ones. If you're just looking for a list of possible problems, you might as well open a med school text book.

Better yet, someone could organize all known medical conditions into a database by searchable symptoms and severity, and compose an algorithm to list possibilities by likelihood.

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

#50
to pepper both Beth, the pediatrician, and Emily, the pediatric cardiologist, with an endless series of random questions with which I was too embarrassed to bother my own doctors

It's your child's health! Why are there any questions that you are too embarrassed to ask his doctors?

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