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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.

#11

Post by jrockway »

sukuriant wrote: post #3
jrockway wrote: post #2

Never underestimate the usefulness of bored friends.

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.)

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

#12

Post by swampthing »

kenjackson wrote: post #7
swampthing wrote: post #4

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 doc…

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 con…

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).

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

#13

Post by 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.

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

#14

Post by Mz »

mitcheme wrote: post #8
Mz wrote: post #6

Earlier quoted context omitted.

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.

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

#15

Post by 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.

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

#16

Post by epynonymous »

epynonymous wrote: post #15

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 ca…

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.

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

#19

Post by kenjackson »

duncanj wrote: post #10
kenjackson wrote: post #7

Earlier quoted context omitted.

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 con…

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. Per…

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".

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

#20

Post by kenjackson »

swampthing wrote: post #12
kenjackson wrote: post #7

Earlier quoted context omitted.

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 con…

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…

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.

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