4 ms·

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 so

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 15y ago
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.
- duncanj 15y ago
  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?
  - kenjackson 15y ago
    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".
- swampthing 15y ago
  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 15y ago

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.

duncanj 15y ago
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?
- kenjackson 15y ago
  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".
swampthing 15y ago
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).