
My social network helped diagnose a rare disease that our doctors missed. - mattraibert
http://www.slate.com/id/2297933/pagenum/all/
======
rektide
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 network, the collective knowledge, it's
connecting to the right individuals.[1]

[1] [http://lens.blogs.nytimes.com/2011/06/22/world-war-ii-
myster...](http://lens.blogs.nytimes.com/2011/06/22/world-war-ii-mystery-
solved-in-a-few-hours/)

~~~
Mz
Actually, as a former homemaker who was routinely made to feel like an idiot
by doctors and often felt like showing up at the hospital with a list of my
academic credentials stapled to my lapel, my read on it is a little different.
It looks to me like one of the big things was not the diagnosis per se but
shoring up her confidence to stand up for her child and insist on being taken
seriously. In addition to the excerpt below, earlier in the article she
indicates her spouse was dismissing it as nothing.

 _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._

------
kscaldef
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.

~~~
mistermann
>"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.

------
swampthing
Awesome example of crowd-sourcing.

To be honest, if I was her, I'd be a little upset (not sure at who but maybe
just at the situation) that it wasn't caught sooner. It's great that the kid
is alive, but judging by what the author wrote about the disease, it sounds
like he is worse off for the delay.

The ideal user experience would give me more control. I think it's fine to
outsource the decision-making process to doctors if you so choose, but there
should also be an easy way to get a list of every single possibility, along
with associated cost of eliminating those possibilities, etc. Yes, some
diseases are really rare, but maybe the consequences of leaving it uncaught
for some period of time are severe enough that I'm willing to pay to test for
it up-front.

I'm sure most people would still opt for just letting the doctor handle
everything (paradox of choice, etc.) but it seems broken that this is not at
least an option. I suppose you could theoretically push your physician today
for this information, but my intuition is that it'd be difficult.

I don't know what it would take to make this a reality (my guess is a lot of
changes in the economic structure of healthcare would need to be made) but I
think we should strive toward this ideal.

~~~
kenjackson
The problem is that misdiagnosis is really easy.

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.

~~~
swampthing
Ideally, if your HIV test comes back positive, you'd also be given information
such as how likely false positives are and what the economic / health
consequences of starting the HIV regimine (versus getting a second test) are.

I understand that the way things are currently structured, it might be
detrimental to the system as a whole to dive into the more obscure stuff.
However, it's safe to say in this case, this boy suffered as a result.
Ideally, there wouldn't be this tradeoff between the efficiency of the system
and any one individual's health.

I definitely don't think this ideal will be easy to achieve, or know what
needs to happen to make it possible, but I think we should strive for it. I
realize it's pretty lame to critique the system without offering a solution -
but I felt compelled to post because the article struck me as an example of
how the medical system can fail people, as much as it's an example of the
power of FB, etc. (yet it didn't seem to strike people as such).

~~~
kenjackson
_Ideally, if your HIV test comes back positive, you'd also be given
information such as how likely false positives_

Unfortunately, try telling someone that the ELISA test is 99% accurate to
resasure them that they probably aren't HIV positive. :-)

 _Ideally, there wouldn't be this tradeoff between the efficiency of the
system and any one individual's health._

If we could diagnose w/ 100% accuracy then it would be easy. If our
medications had no side effects and resistance to antibiotics didn't then it
would be easy. But once you put those two things together, even throwing
economics aside, you have to be careful that you're not harming more people
than helping, net.

While FB saved the day here, I know from my doctor friends that online
diagnosis in the hands of most people hasn't been net beneficial. With that
said, in the hands of some (and I suspect that those of us on HN are in this
minority) we can provide real value to doctors.

~~~
swampthing
_If we could diagnose w/ 100% accuracy then it would be easy. If our
medications had no side effects and resistance to antibiotics didn't then it
would be easy. But once you put those two things together, even throwing
economics aside, you have to be careful that you're not harming more people
than helping, net._

Well, in my last paragraph, I said it probably wouldn't be easy. Doesn't mean
we shouldn't try. I admit, I have a bias towards personal choice - I suppose
it's possible society would be worse off with more freedom in this case.

------
FaceKicker
Bored stay-at-home moms (and I know you all read HN), please don't take this
article as a suggestion to make even more Facebook posts about your children.
:(

(Seriously though, pretty amazing story...I find it pretty unbelievable that
not just one but three of her FB friends knew about a rare immune disorder.)

~~~
VladRussian
>three of her FB friends knew about a rare immune disorder.

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?

~~~
pbhjpbhj
There wasn't really a very clear timeline but you appear to have confused
things somewhat.

The parents noticed the rash and swelling on the Sunday and so were in the
paediatricians office that same day. If the [emergency] paediatrician gives a
clear diagnosis in person would you really say "hang on a minute Google's
SERPs say I should call 911". You're standing there with the doctor, you don't
need to call for one.

The next day [Monday] it seems the mother sent images to her family doctor.
The test to confirm the diagnosis came back false and one of the images sent
to the doctor was incidentally posted on Facebook. A friend, mother of a
Kawasaki disease sufferer, and a relative who specialised in cardiology both
offered the diagnosis that pushed the mother to go to seek emergency medical
aid _for the second time_.

She doesn't say what her family doctor's reaction to the second diagnosis was
nor interestingly does it appear that the paediatrician she sought counsel
from offer an alternate diagnosis when tests came back negative (though this
info could just be missing).

~~~
VladRussian
>If the [emergency] paediatrician gives a clear diagnosis in person would you
really say "hang on a minute Google's SERPs say I should call 911". You're
standing there with the doctor, you don't need to call for one.

Bringing up such seemingly applicable to your case search results while
talking with doctor is necessary even if only to make sure that the
professional would rule the results out as not really applicable to your
situation.

Anyway, if you replace "Google SERP's" with "FB social search", then your gave
a pretty accurate description of what happened in the article. It is just that
"FB social search" took days, though it happened to bring more specific
results.

------
vl
Well, may be article is sensationalized and doesn't reflect the reality, but
wasn't it obvious that they they had to go to the hospital on the second day
when symptoms got worse despite the amoxicillin? "Eyes swelled shut" and you
still talking to your Facebook friends?

~~~
pbhjpbhj
> _"Eyes swelled shut" and you still talking to your Facebook friends?_

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?

~~~
vl
>Could you say how you feel the article is sensationalised?

May be in reality situation on the second day was not as obvious as described
in the article, but from the article it's clear that treatment was not
working, and new measures were required. If on the second day of taking
antibiotics situation is getting worse, at least for me it's the indication to
go to the hospital.

------
Shenglong
_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.

------
jaed
Check out Sermo - it's been around since 2006 or so and has an iPhone app that
lets docs take a picture and get crowd-sourced advice. www.sermo.com

~~~
jaed
<http://www.sermo.com>

------
jrockway
Never underestimate the usefulness of bored friends.

~~~
sukuriant
You mean friends that have been through life and had experiences you haven't,
right? I believe it was the one that had a child that had had the illness that
first suggested that illness.

~~~
jrockway
I mean, friends looking through a page of your random thoughts, and then
typing in their thoughts about that thought. It's not something people really
did before Facebook; sure, you could call people "just to chat", but this is
on a much greater scale.

This article is a look at the good that can come from this.

(I say "bored friends" because people don't read Facebook updates when they
are engaged in highly-stimulating mental activities. It's a downtime thing.)

~~~
pbhjpbhj
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.

~~~
jrockway
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.

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

~~~
jrockway
No edits.

------
JohnJacobs
_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?

------
epynonymous
i was thinking about a site like this awhile back because it seems doctors
typically only have a few data points on most matters. the site would almost
be analogous to code review except you're posting symptoms and pictures
instead of code, the result is that you get more sets of eyes on the problem.
the only drawback is that the wrong diagnosis could be fatal whereas a bad
checkin problem just breaks the build or causes the controls of an airplane to
malfunction and crash flaming into the ground. probably a legal nightmare.

~~~
epynonymous
btw this is an invitation for lawyers or legal experts to prove me wrong so i
can go build this. i personally found a need for this type of site a while
back for myself, of course i would take each person's feedback with a (larger)
grain of salt and still consult my doctors.

~~~
Mz
I'm not a lawyer but I do belong to a number of health lists and I do run a
health site and my day job is in a related industry, so I get ongoing training
and exposure to some of the laws and these types of issues.

a) All email support groups (that I belong to) have huge disclaimers at the
bottom of every email announcing something like "This is a free and open
discussion of health issues. This is not medical advice. Please consult your
doctor...blah blah blah" to try to cover their butts.

b) A published author in the alternative health space actively encouraged me
to adapt his own written disclaimer to put on my website to try to help me
cover my butt. He has at least once been dragged before a medical review
board/court/some such because of the information he disseminates. So, yeah,
it's a real problem.

c) Privacy laws are a big deal and there are very big problems with
encouraging people to post pics of symptoms, including how much of the body to
show. I have seen a photo of a naked child (from the back) covered in a rash
posted on a group and I think it was handled carefully by someone
knowledgeable (the woman who posted it was herself a lawyer, so I imagine she
knew what she was doing) but I can see this space being open to serious
pitfalls in that regard.

d) I went and did the very rude thing of getting myself healthy when that is
supposed to be impossible given my diagnosis. I have been repeatedly told that
I am engaging in irresponsible, dangerous, evil behavior for talking about how
I accomplished that, even though the path I followed is really incredibly
conservative (for example: get informed about food chemistry because
everything you put in your mouth has an impact on your body chemistry).

So, in short, there are some very big problems/challenges with your idea. Your
concerns are real concerns, not neurotic worries at all. That doesn't mean it
can't be done. But, no, there is no magic wand of "I talked to a lawyer and
it's all okay now". You would have a lot of work to do to make this at all
viable.

~~~
epynonymous
thanks mz, this has been incredibly informative, i agree that there's no magic
bullet hand waving that could approve/disapprove this, and thanks for sharing
your experiences.

i was thinking of the goal of this site, it would be all non-profit in hopes
of helping mankind to bring an alternative for the machine that is today's
modern medical system. i will noodle on this a bit more, the last thing i want
is someone to be harmed by something that i've done, especially if the goal is
to help. and anything that gets big, even if it's non-profit would be a target
for litigation.

~~~
Mz
_thanks mz_

No problem.

 _goal of this site: helping mankind to bring an alternative for the machine
that is today's modern medical system_

Yeah, I'm working on a piece of that. It's slow going to win mindshare in this
space. Alternative stuff tends to have a bad rep in a lot of circles. There's
lots of challenges with that piece of it alone.

 _the last thing i want is someone to be harmed by something that i've done,
especially if the goal is to help._

Ditto. I have often contemplated taking down my website. But given how deadly
my condition is, I feel doing nothing is the bigger danger. :-/

Peace.

------
gojomo
I sense the next Zynga hit: DiagnosisVille.

------
trentfowler
The title is not sensationalist enough. It should read: "How Facebook Cured
Kawasaki's Disease"

~~~
pbhjpbhj
The title is descriptive of the story, succinct, without dramatisation or
hyperbole. What would you have it read instead?

~~~
trentfowler
The title is perfect. Looking back, I'm not surprised you took it the wrong
way. It was a bad joke.

