10 ms·

With the explosion of information and data collected about diseases, it is quite possible for a patient to walk in with a rare disease to be FAR more informed a

by maeon3 15y ago

With the explosion of information and data collected about diseases, it is quite possible for a patient to walk in with a rare disease to be FAR more informed about his condition than any doctor. If you have a rare disease, then it behooves you to put on your Science hat and get creative about how to motivate smart people to investigate your condition rather than going to a doctor to have him tell you that it is hopeless and the best he can do is give you a battery of drugs which might work, and that you have 1 year to live.

thaumaturgy 15y ago
You're right, but don't forget about all the many hypochondriacs out there; unfortunately, given the current Western model of medical care, a doctor may not know their patient well enough to know if the patient has rationally, logically, and objectively diagnosed themselves, or if the patient has a psychological disorder instead that's manifesting as a rare physical disease.
- joe_the_user 15y ago
  Yes, the situation today is an extraordinary dilemma. I'm not sure why hypochondriacs are so common today but I would speculate that this it is because many people are starved for attention. But you have a situation where a doctor, who is a highly professional but not a research scientist, confronts a growing number of individuals who have gotten a mass of scientific information from the Internet but are proportionately even less likely to engage in a rational process of determining what malady they have. Some of these patients probably know what's wrong with them much better than the doctor but what percentage is it? What is likely to happen given a health care system which measures the doctor's visit times by the second? Perhaps there should be online exam for patients wanting to diagnose themselves, including basic test of inferential reasoning? Hey, there's a startup idea for you - a website which prepares your diagnosis using language your doctor can understand.
- philwelch 15y ago
  There's also something called "medical students' disease" (http://en.wikipedia.org/wiki/Medical_students_disease http://en.wikipedia.org/wiki/Medical_students_disease) where people who research medical conditions become convinced that they have those conditions. It's easy to see how a hypochondriac researching their medical problems online would end up developing medical students' disease.
CamperBob 15y ago
With the explosion of information and data collected about diseases, it is quite possible for a patient to walk in with a rare disease to be FAR more informed about his condition than any doctor. That doesn't necessarily mean anything, though. When I broke my collarbone last year, I joined a massive 'community' of patients with the most commonly broken bone in the human body. Initially I thought it'd be easy to get advice online with regard to what to expect in terms of healing time, mobility, pain, and long-term outcome, and what therapies were most/least effective. It wasn't. What I found made me realize that self-diagnosing pretty much anything on the Internet, no matter how trivial, is a really bad idea... and that this is true regardless of whether the doctors have better advice to offer. Even if the consensus of doctors, nurses, authors, coaches, and fellow sufferers was that "Each case is different, so it's impossible to generalize about any of those things," that would've been fine. Unsatisfying, but fine. It would've been the correct conclusion for a new patient to reach. But it wasn't. If you look up clavicle fractures on the Web, you'll find a ridiculous array of claims, anecdotes, and received wisdom... and that's just in the peer-reviewed literature, never mind the various sports and health forums. It turns out that nobody really knows the best way to treat collarbone fractures of a given type and severity. Ultimately you just go back for x-rays every couple of months (weeks) until the doctor tells you you can (remove the sling carefully) (get back on the bike) (pick fights with bears.) The nature and location of the fracture affects the prognosis, but doesn't have much to do with the treatment for those patients who don't opt for surgery. Some doctors swear by sling type X, others by brace type Y. Some doctors will yell at you to keep your sling on at all times; other doctors will tell you not to bother with it past the first three or four weeks unless you actually experience pain. Some doctors say not to lift anything at all; others say it's OK to lift until it hurts. The spectrum of advice given to patients who post essentially the same x-rays to various sports forums is amazing, as are the anecdotes ranging from "I blew off the doctor and went swimming in 4 weeks, no problem" to "I followed the doctor's advice and ended up in painful/painless surgery six months/two years later." Again, none of this is unreasonable given the differences from one case to the next... but you won't recognize this fact based on advice found online. What most people will be tempted to do is surf until they get an answer they like, and then walk away from the browser thinking they know more than they did when they sat down. As an exercise, I recommend that even HN readers with intact clavicles spend a couple of hours researching the condition from the POV of a newly diagnosed patient. You may not come away as disillusioned with the wisdom of the Internet as I did, but I believe you will think twice about the quality of online information if you're ever diagnosed with a serious, uncommon condition like Crohn's. Sorry, Crohn's (and collarbone) patients -- sometimes the truth just isn't out there.

by maeon3 15y ago

With the explosion of information and data collected about diseases, it is quite possible for a patient to walk in with a rare disease to be FAR more informed about his condition than any doctor. If you have a rare disease, then it behooves you to put on your Science hat and get creative about how to motivate smart people to investigate your condition rather than going to a doctor to have him tell you that it is hopeless and the best he can do is give you a battery of drugs which might work, and that you have 1 year to live.

thaumaturgy 15y ago

You're right, but don't forget about all the many hypochondriacs out there; unfortunately, given the current Western model of medical care, a doctor may not know their patient well enough to know if the patient has rationally, logically, and objectively diagnosed themselves, or if the patient has a psychological disorder instead that's manifesting as a rare physical disease.

joe_the_user 15y ago
Yes, the situation today is an extraordinary dilemma. I'm not sure why hypochondriacs are so common today but I would speculate that this it is because many people are starved for attention. But you have a situation where a doctor, who is a highly professional but not a research scientist, confronts a growing number of individuals who have gotten a mass of scientific information from the Internet but are proportionately even less likely to engage in a rational process of determining what malady they have. Some of these patients probably know what's wrong with them much better than the doctor but what percentage is it? What is likely to happen given a health care system which measures the doctor's visit times by the second? Perhaps there should be online exam for patients wanting to diagnose themselves, including basic test of inferential reasoning? Hey, there's a startup idea for you - a website which prepares your diagnosis using language your doctor can understand.
philwelch 15y ago
There's also something called "medical students' disease" (http://en.wikipedia.org/wiki/Medical_students_disease http://en.wikipedia.org/wiki/Medical_students_disease) where people who research medical conditions become convinced that they have those conditions. It's easy to see how a hypochondriac researching their medical problems online would end up developing medical students' disease.

CamperBob 15y ago

With the explosion of information and data collected about diseases, it is quite possible for a patient to walk in with a rare disease to be FAR more informed about his condition than any doctor. That doesn't necessarily mean anything, though. When I broke my collarbone last year, I joined a massive 'community' of patients with the most commonly broken bone in the human body. Initially I thought it'd be easy to get advice online with regard to what to expect in terms of healing time, mobility, pain, and long-term outcome, and what therapies were most/least effective. It wasn't. What I found made me realize that self-diagnosing pretty much anything on the Internet, no matter how trivial, is a really bad idea... and that this is true regardless of whether the doctors have better advice to offer. Even if the consensus of doctors, nurses, authors, coaches, and fellow sufferers was that "Each case is different, so it's impossible to generalize about any of those things," that would've been fine. Unsatisfying, but fine. It would've been the correct conclusion for a new patient to reach. But it wasn't. If you look up clavicle fractures on the Web, you'll find a ridiculous array of claims, anecdotes, and received wisdom... and that's just in the peer-reviewed literature, never mind the various sports and health forums. It turns out that nobody really knows the best way to treat collarbone fractures of a given type and severity. Ultimately you just go back for x-rays every couple of months (weeks) until the doctor tells you you can (remove the sling carefully) (get back on the bike) (pick fights with bears.) The nature and location of the fracture affects the prognosis, but doesn't have much to do with the treatment for those patients who don't opt for surgery. Some doctors swear by sling type X, others by brace type Y. Some doctors will yell at you to keep your sling on at all times; other doctors will tell you not to bother with it past the first three or four weeks unless you actually experience pain. Some doctors say not to lift anything at all; others say it's OK to lift until it hurts. The spectrum of advice given to patients who post essentially the same x-rays to various sports forums is amazing, as are the anecdotes ranging from "I blew off the doctor and went swimming in 4 weeks, no problem" to "I followed the doctor's advice and ended up in painful/painless surgery six months/two years later." Again, none of this is unreasonable given the differences from one case to the next... but you won't recognize this fact based on advice found online. What most people will be tempted to do is surf until they get an answer they like, and then walk away from the browser thinking they know more than they did when they sat down. As an exercise, I recommend that even HN readers with intact clavicles spend a couple of hours researching the condition from the POV of a newly diagnosed patient. You may not come away as disillusioned with the wisdom of the Internet as I did, but I believe you will think twice about the quality of online information if you're ever diagnosed with a serious, uncommon condition like Crohn's. Sorry, Crohn's (and collarbone) patients -- sometimes the truth just isn't out there.