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]
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.
Arguably the network vastly increases the chances that we will connect to the right individuals by disseminating information quickly and broadly.
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.
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.
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.
Her strategy is quite reasonable for someone with a rare or hard to diagnose disease which most doctors have never seen or even know about. There is a decent chance that there is someone out there who has the disease and give useful disease.
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.
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).
>"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.
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.
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.
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).
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.
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.
I understand what you're trying to say, but in your specific example, it's more like 15/1000 would be sent on for confirmatory testing (western blot), of which only about 1 in 10,000 would be false positives. In your scenario, this screening of those who request the test but otherwise do not need it would result in statistically very few false positives, on the order of 1 in 175,000 of those who make the request.
Perhaps a more likely error would be among those who request testing for Lyme disease (currently a popular self diagnosis) and thus get put on an unnecessary regimen of doxycycline. I'm racking my brain trying to think of an example that would be much, much worse. Perhaps testing for antinuclear antibodies and getting diagnosed with lupus?
Yes, I was trying to think of a "chronic" condition where a test result is sufficient to believe you have the illness (that is, the lack of symptoms is not sufficient).
But I think we both agree that HIV is a generous case in that the testing is fairly accurate. There are many illnesses with no great tests. The more obscure, the more likely there won't be a test for it. So you end up in a situation where you go to the doctor with a rash and your diagnosis is "an allergy to strawberries or leprosy".
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.)
Bored stay-at-home moms (and I know you all read HN)
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...
I have to say it would be pretty awesome if there was a sudden influx in bored SAHMs learning to program / contributing to open source / starting their own company.
FWIW: I did post a link to HN on a homeschooling list where a parent (most likely a mom, since such lists tend to be dominated by women) was asking for resources related to programming. I also posted a link to a particular discussion here on another list (a really tiny list). I have long told my two sons that they aren't likely to be employable (especially my older son) so they need to plan on making their own company. I will likely do more to promote the "start your own business" concept to homeschoolers. I think there are some significant parallels between the two mindsets/lifestyles and I think homeschooling is good preparation for starting a business, much better preparation for that than for becoming a drone at a large company.
Cool. :) If it's not too rude, why unemployable? Does homeschooling just create people who are too independent to be a good fit with a lot of employers, or do employers/college admissions see a homeschool education as less valuable than public/private?
I homeschooled my sons because they are both "twice exceptional": gifted and learning disabled/otherwise handicapped. They didn't fit into the school system and they won't fit in well in most environments. There is an old, out of date website where I talk some about parenting and homeschooling them if your curiosity requires more than a two sentence explanation to satisfy: http://www.kidslikemine.com/ I don't mind talking about it. I just haven't been sleeping well this week and I'm quite tired.
I think the two-sentence explanation was enough for me to get the idea. I knew a guy like that when I was a teenager, very smart, decent guy but problems getting along with people. (I think he made his money doing freelance programming actually, so we've come full circle.) Thanks for the link, though; your kids' blog is great. Gaming plus plothole-picking plus social consciousness is one of my favorite combos.
Thanks. I'm really glad to hear you like the blog. So far, it hasn't seen much traffic/gotten much feedback so it's very nice to hear that. (If you have any ideas on how to promote the blog, drop me a line.)
Well two of them did work in pediatrics where they'd both presumably seen it before, it might be rare but obviously wasn't in the "once in a lifetime" category.
>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?
> sounds like not that rare. Or is it rare just because doctor couldn't diagnose it?
The highest incidence of Kawasaki Disease is in Japan, at 0.175% (175 cases per 100,000 children younger than five). In the UK, it's around 0.008%, though may be on the rise. In the USA, it's between 0.009% and 0.019%, according to the CDC. That's certainly fairly rare, and it doesn't surprise me that it wasn't the first thing the doctor thought - if you read the article to the end, you'll notice that he said that "[he] was actually just thinking it could be Kawasaki disease," after she called him from the hospital. As another person mentioned, he was maybe a a few hours behind the social network in his diagnosis.
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).
>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.
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?
>"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?
>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.
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.
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.
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.)
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.
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?
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.
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.
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.
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.
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. :-/
[1] http://lens.blogs.nytimes.com/2011/06/22/world-war-ii-myster...