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I've worked in the medical / pharmaceutical industry for 5 years, had a lot of close contact with all kinds of medical professionals and surgeons and let me tel

by stef25 16y ago

I've worked in the medical / pharmaceutical industry for 5 years, had a lot of close contact with all kinds of medical professionals and surgeons and let me tell you - they will hate this idea and most likely not spend any time taking in any of the (potentially useful) data on there. More and more you come across notes in a patient file that say mention the patient read something on the net and is convinced this is his problem, countering what their doctor is telling them and as a result being a very difficult patient. I'd imagine most doctors absolutely hate pseudo medical websites because of this. There have been some stories in the past of parents taking the medical care of their "undiagnosable" child in to their own hands and coming out successfully but the stories are few and far between. Just recently I was reading on a forum about a small medical issue of my own and the amount of crap advise was unbelievable. People will feel that their doctor is "wrong" if he doesn't give them enough attention, regardless of whether or not he is. Getting dozens of replies to your described problem may be encouraging but my opinion is that a medically trained professional is far more likely to be "right" compared to "the crowd". You can get round liability issues by making users comply with the terms and conditions but I'm not sure that as a developer I could live with the potential guilt of misguiding hopeless patients with an app I wrote. Having said that the OP's situation must be very frustrating and crowd sourcing could be a good strategy, in this case. One success story was a post on reddit where someone with bad acne was almost completely cured after a redditor suggested ditching all the meds and simply sleeping on a different, clean pillow cover every night. So "simple" solutions to complex medical problems do exist. I'd certainly give Vivtek's original post a try, you have nothing to lose. Good luck to you OP!!

Vivtek 16y ago
Without loss of any generality, I can tell you that in the case of our daughter, the information we eventually tracked down and applied was far, far, far more useful than the trained professionals we were working with at the time. Her gastroenterologist had come highly recommended, was dedicated, gave us all the time we needed, and was dumber than a bag of hammers, poor man. Yeah, he sure did think we were difficult patients, I'll give you that - but that note in the file represents the doctor's insecurity, and not necessarily that the patient is an idiot. (And I really must hasten to agree that there are a lot of idiots. It's a case-by-case thing.) People research their own medical issues when they're not getting satisfactory treatment. Simple as that. If you had a family doctor you trusted, who you felt was giving you the straight-up truth about what was wrong, what he was doing, why things were happening, you wouldn't need to go reading poorly spelled forum entries by mental midgets using crystals. In our son's case, we went through seven nephrologists before finding one that was satisfactory. (Well, actually two of the others were OK, but logistically more difficult.) Our dealings with Riley Children's Hospital's head nephrologist were disastrous, truly disastrous, another bag-of-hammers case, and she's respected in the field. But the problem with parents taking medical care of their undiagnosable or untreatable children in hand is that most people don't know how to separate bullshit from valuable information (of course, this applies even if you're dealing with the professionals), and the deck is stacked against you in major ways. We're kind of an exception. I've been told I should write a book about our experience, but jeez, who's got time for that? Balance this against some very good experiences we've had in the past with physicians treating my wife, but seriously - medical training is overrated, to an alarming degree. As is most training, of course, but medical training is so fetishized that it stands apart.
rwhitman 16y ago
Ok, so whats the difference if someone posts to reddit or a site dedicated to solving problems? That person is still going to consult the masses, they might as well be educated. And my thinking here is less about it being a generalized medical board and much more about concentrating educated brainpower on solving chronic conditions. You could flip this around and make it a private tool for the doctor to use in extreme situations. Not even let the patient use it. Say you live in podunk South Dakota. You go to the only doctor in town. Do they have the expertise to solve a complex condition? What if they aren't very good? How are they supposed to help you if your other options are out of reach? In this scenario a doctor with limited experience can tap into the crowd and get specialists chiming in from areas they would never think about. Pretty useful solution, I'd say

by stef25 16y ago

Vivtek 16y ago

Without loss of any generality, I can tell you that in the case of our daughter, the information we eventually tracked down and applied was far, far, far more useful than the trained professionals we were working with at the time. Her gastroenterologist had come highly recommended, was dedicated, gave us all the time we needed, and was dumber than a bag of hammers, poor man. Yeah, he sure did think we were difficult patients, I'll give you that - but that note in the file represents the doctor's insecurity, and not necessarily that the patient is an idiot. (And I really must hasten to agree that there are a lot of idiots. It's a case-by-case thing.) People research their own medical issues when they're not getting satisfactory treatment. Simple as that. If you had a family doctor you trusted, who you felt was giving you the straight-up truth about what was wrong, what he was doing, why things were happening, you wouldn't need to go reading poorly spelled forum entries by mental midgets using crystals. In our son's case, we went through seven nephrologists before finding one that was satisfactory. (Well, actually two of the others were OK, but logistically more difficult.) Our dealings with Riley Children's Hospital's head nephrologist were disastrous, truly disastrous, another bag-of-hammers case, and she's respected in the field. But the problem with parents taking medical care of their undiagnosable or untreatable children in hand is that most people don't know how to separate bullshit from valuable information (of course, this applies even if you're dealing with the professionals), and the deck is stacked against you in major ways. We're kind of an exception. I've been told I should write a book about our experience, but jeez, who's got time for that? Balance this against some very good experiences we've had in the past with physicians treating my wife, but seriously - medical training is overrated, to an alarming degree. As is most training, of course, but medical training is so fetishized that it stands apart.

rwhitman 16y ago

Ok, so whats the difference if someone posts to reddit or a site dedicated to solving problems? That person is still going to consult the masses, they might as well be educated. And my thinking here is less about it being a generalized medical board and much more about concentrating educated brainpower on solving chronic conditions. You could flip this around and make it a private tool for the doctor to use in extreme situations. Not even let the patient use it. Say you live in podunk South Dakota. You go to the only doctor in town. Do they have the expertise to solve a complex condition? What if they aren't very good? How are they supposed to help you if your other options are out of reach? In this scenario a doctor with limited experience can tap into the crowd and get specialists chiming in from areas they would never think about. Pretty useful solution, I'd say