8 ms·
My social network helped diagnose a rare disease that our doctors missed.
- jrockway 15y agoNever underestimate the usefulness of bored friends.
- sukuriant 15y agoYou 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 15y agoI 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 15y agoI 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.
- swampthing 15y agoAwesome 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 15y agoThe 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.
- FaceKicker 15y agoBored 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.)
- ig1 15y agoWell 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.
- Mz 15y agoBored 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... ;-)
- mitcheme 15y agoI 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.
- Mz 15y agoFWIW: 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.
- kscaldef 15y agoa) 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.
- russell 15y agoHer 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. [1] no spiders involved at all.
- mistermann 15y ago>"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.
- epynonymous 15y agoi 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 15y agobtw 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 15y agoI'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.
- jaed 15y agoCheck 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
- vl 15y agoWell, 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 15y ago>"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 15y ago>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.
- trentfowler 15y agoThe title is not sensationalist enough. It should read: "How Facebook Cured Kawasaki's Disease"
- pbhjpbhj 15y agoThe title is descriptive of the story, succinct, without dramatisation or hyperbole. What would you have it read instead?
- trentfowler 15y agoThe title is perfect. Looking back, I'm not surprised you took it the wrong way. It was a bad joke.
- rektide 15y agoHer 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-mystery-solved-in-a-few-hours/ http://lens.blogs.nytimes.com/2011/06/22/world-war-ii-myster...
- Mz 15y agoActually, 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.
- sneak 15y agoArguably 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.
- nl 15y agoYes, 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/ http://michaelnielsen.org/blog/kasparov-versus-the-world/
- deleted 15y ago[deleted]
- gojomo 15y agoI sense the next Zynga hit: DiagnosisVille.
- Shenglong 15y agoit 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.
- JohnJacobs 15y agoto 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?