6 ms·

This is an amazing story - and pretty much my worst nightmare. Not necessarily cancer itself, but the feeling and anxiety that you're not being treated and take

This is an amazing story - and pretty much my worst nightmare. Not necessarily cancer itself, but the feeling and anxiety that you're not being treated and taken care of properly and that someone might be missing something. That doctors are (rightfully) unable to pay proper attention to everyone and everything just due to the sheer number of patients they must see. I know I'm prone to hypochondria, and it doesn't help to read things like this. I can't wait for a world where we can constantly monitor the body easily, and abnormalities can be detected quickly and unequivocally, and even have software that can aid doctors in diagnosing. I've read articles where doctors approach such ideas with skepticism, saying that more data isn't necessarily better, which surprises me very much. How can you look at two data points on a curve and guess what the curve looks like? Anyone else feel similarly? ---- edit: I see false positives and the cost of dealing with them brought up often in the replies - I think this is an issue exactly /because/ we suck so much at diagnosis. The argument that what you see may be wrong, therefore you must close your eyes just blows my mind. So you'd rather base timely detection of true positives on random chance? Maybe if we saw these false positives much more often then we could observe the false positives properly and know how to identify them and improve diagnostics. Or maybe we'd be able to know better when intervening would be more harmful than not intervening. That an intervention would be harmful should not affect the choice to monitor. And then there is also the issue of the diagnosis itself being potentially harmful (full-body CTs etc) which is equally terrifying and even more conflicting. We can also improve there too. In any case, this was supposed to be more about the nondiagnosis anxiety, but I'm not unhappy with where this discussion went.

carbocation 12y ago
Historically I have fallen into the "don't do unnecessary tests" camp, but I would be willing to consider an alternative viewpoint. Perhaps what is needed is continuous monitoring of biochemical data from volunteers longitudinally to help us understand if any of that data is actionable in a way that reduces suffering or prolongs life. I think the right sensors have not yet been invented for this purpose, but they are probably getting close.
- emcrazyone 12y ago
  You're not alone. I agree with you and a very wealthy friend of mine who owns his own company bought an MRI machine for his employees and had it installed in the building he owns.
  - jepper 12y ago
    paradoxically there is also a risk involved with false positive diagnosis (be it unnecessary procedures, CT scans, surgeries, anxiety etc.) Also the detection window can be small from detectable to symptomatic for (especially) aggressive tumors. An example is the very difficult discussion on general population mamma carcinoma (breast cancer) or colon cancer screenings. However being well informed and questioning everything is the very best way to be a patient.
  - artmageddon 12y ago
    Wait, does he actually run a medical firm that is licensed to use the MRI machine, or did he just buy one outright? I was told that people couldn't just buy one, you had to represent some kind of medical entity to be able to purchase one.
    - kaybe 12y ago
      Did they give a reason? I can't think of really bad stuff to do with it (except very locally to my own building, and it's not like those are very mobile), and except maybe impersonate a medical entity and rip people off.
wpietri 12y ago
I share your concerns with the US medical system. It is a bunch of busy, reasonably bright people caught up in an insane circus. It on average produces adequate care, but you shouldn't expect much more. Having an active and informed advocate can make an enormous difference. On the other hand, I agree that more data isn't necessarily better. There are plenty of examples. E.g.: http://www.bloomberg.com/news/2012-05-21/prostate-cancer-test-not-worth-risk-advisory-panel-says.html http://www.bloomberg.com/news/2012-05-21/prostate-cancer-tes... If you do early prostate screening, you get worse medical outcomes than when you don't screen. Or consider whole-body scans: http://www.radiologyinfo.org/en/news/newdetarget.cfm?ID=5 http://www.radiologyinfo.org/en/news/newdetarget.cfm?ID=5 They will detect a lot of stuff that doesn't matter, but proving that it doesn't matter will be expensive and possibly harmful. You see a similar phenomenon in investing. As Fooled by Randomness explains well, for most people the best strategy is to set your investments and look at them very rarely. If you watch the investment news all day and trade actively, you may not do better, you could easily do worse, and you'll certainly be much more stressed. But still, there is an endless supply of day-traders.
- malvim 12y ago
  Brazilian here (and surprised to see they used Brazilian research software in a top HN story!). Couple years ago, my wife had a mass on her throat that turned out to be thyroid-related but (thankfully) benign. I had the EXACT same feeling as you, and feel we're copying the US in only the wrong aspects. "A bunch of busy, reasonably bright people caught up in an insane circus" sums it up better than I could. I'll digress here and vent about another aspect of it, but I liked your links about too much data, thanks. Not sure how it is in the US, but what is strange for me here is that it's not only about cutting-edge tech, even old stuff (Email? Messaging of any kind? Hell, phone calls!) is not really used by our hospitals and doctors. Here, if you do any type of imaging exams, y'll have to wait a few days for the results, get them on the lab - physically -, schedule another doctor appointment, wait an hour or so in the waiting room just so your doctor can take a look at the images and tell you, basically: "Ok, you're fine", or "Hmm, I need these other exams to be sure. Here, take this piece of paper where I describe what I need and get it done". Seriously, we use instant messages delivered to phones all around the world simultaneously to share pictures of ourselves, of our cats, dogs and dinners, just for a giggle. And we can't do it to save lives!
drzaiusapelord 12y ago
>That doctors are (rightfully) unable to pay proper attention to everyone and everything just due to the sheer number of patients they must see. Why are we excusing this? This is an allocation and resource problem. Frankly, I never understood why I need to schedule an appointment with a doctor and also visit a pharmacy to get drugs like anti-acids, allergy medicine, short doses of painkillers, antibiotics, short doses of anti-anxiety drugs, anti-depressants, etc. My doctor spends, what I imagine, most of his time on trivial issues and I sympathize with those who have non-trivial issues. It doesn't seem fair to them that they get the same 30 minutes I get for my minor issues. I think society needs to ask itself if we need a full-fledged doctor for many of these tasks. The politics of healthcare are really ugly. Sorry, but a lot of this level 1 stuff could be done by a non-expert. I should be able to just buy these things. Or, at worst, pharmacists should be able to prescribe this stuff. The system as-is is designed to maximize labor, thus billable hours, for doctors. Its a mess when it comes to actually providing care. I understand there's potential for abuse here but I kinda don't care. In my society you have the freedom to stuff your face with Big Macs 3x a day, smoke, become an alcoholic, and soon smoke pot all day. Those all have major risks and are completely legal and mainstream. Yet when I want to heal myself, suddenly the regulators, rent-seekers, and moralists come out of the woodwork.
- webXL 12y ago
  Devil's advocate: one man's cure is another's demise. The vast majority of people know how to regulate their consumption of those not-so-bad things, but regulating their consumption of healing technology without understanding the potential downsides is what the powers at be are concerned about. But I generally agree with you, it is an allocation problem, and the best way to allocate resources is removing arbitrary barriers to trade and promoting specialization. We're overly concerned about what might kill us and hardly concerned about improving the overall quality of our lives. The latter makes the former easier to deal with, but the need to feel safe and taken care of trumps freedom, I guess.
  - drzaiusapelord 12y ago
    I've had stomach trouble my whole life. It was a Big Deal for my uninsured parents to get me Zantac. It involved a script from a specialist and paying out the inflated cost at the pharmacy. This was done for my safety, afterall, the industry and doctors were worried about risk, right? I'm just a dumb patient. What could I know compared to the experts, right? Zantac can now be gotten OTC for next to nothing. Its completely safe. There was no patient risk for this drug. Same when I had to ask a doctor for Claritin. It also is safe as an OTC drug now. Meanwhile, we have research that shows that even a slight overdose of acetaminophen can seriously damage your liver. The whole system is about maximizing profits for healthcare. It has very little to do with outcomes or patient safety. This is why so many people aren't getting the care they need. The industry is too busy creating "make work" for profits.

carbocation 12y ago

Historically I have fallen into the "don't do unnecessary tests" camp, but I would be willing to consider an alternative viewpoint. Perhaps what is needed is continuous monitoring of biochemical data from volunteers longitudinally to help us understand if any of that data is actionable in a way that reduces suffering or prolongs life. I think the right sensors have not yet been invented for this purpose, but they are probably getting close.

emcrazyone 12y ago
You're not alone. I agree with you and a very wealthy friend of mine who owns his own company bought an MRI machine for his employees and had it installed in the building he owns.
- jepper 12y ago
  paradoxically there is also a risk involved with false positive diagnosis (be it unnecessary procedures, CT scans, surgeries, anxiety etc.) Also the detection window can be small from detectable to symptomatic for (especially) aggressive tumors. An example is the very difficult discussion on general population mamma carcinoma (breast cancer) or colon cancer screenings. However being well informed and questioning everything is the very best way to be a patient.
- artmageddon 12y ago
  Wait, does he actually run a medical firm that is licensed to use the MRI machine, or did he just buy one outright? I was told that people couldn't just buy one, you had to represent some kind of medical entity to be able to purchase one.
  - kaybe 12y ago
    Did they give a reason? I can't think of really bad stuff to do with it (except very locally to my own building, and it's not like those are very mobile), and except maybe impersonate a medical entity and rip people off.

wpietri 12y ago

I share your concerns with the US medical system. It is a bunch of busy, reasonably bright people caught up in an insane circus. It on average produces adequate care, but you shouldn't expect much more. Having an active and informed advocate can make an enormous difference. On the other hand, I agree that more data isn't necessarily better. There are plenty of examples. E.g.: http://www.bloomberg.com/news/2012-05-21/prostate-cancer-test-not-worth-risk-advisory-panel-says.html http://www.bloomberg.com/news/2012-05-21/prostate-cancer-tes... If you do early prostate screening, you get worse medical outcomes than when you don't screen. Or consider whole-body scans: http://www.radiologyinfo.org/en/news/newdetarget.cfm?ID=5 http://www.radiologyinfo.org/en/news/newdetarget.cfm?ID=5 They will detect a lot of stuff that doesn't matter, but proving that it doesn't matter will be expensive and possibly harmful. You see a similar phenomenon in investing. As Fooled by Randomness explains well, for most people the best strategy is to set your investments and look at them very rarely. If you watch the investment news all day and trade actively, you may not do better, you could easily do worse, and you'll certainly be much more stressed. But still, there is an endless supply of day-traders.

malvim 12y ago
Brazilian here (and surprised to see they used Brazilian research software in a top HN story!). Couple years ago, my wife had a mass on her throat that turned out to be thyroid-related but (thankfully) benign. I had the EXACT same feeling as you, and feel we're copying the US in only the wrong aspects. "A bunch of busy, reasonably bright people caught up in an insane circus" sums it up better than I could. I'll digress here and vent about another aspect of it, but I liked your links about too much data, thanks. Not sure how it is in the US, but what is strange for me here is that it's not only about cutting-edge tech, even old stuff (Email? Messaging of any kind? Hell, phone calls!) is not really used by our hospitals and doctors. Here, if you do any type of imaging exams, y'll have to wait a few days for the results, get them on the lab - physically -, schedule another doctor appointment, wait an hour or so in the waiting room just so your doctor can take a look at the images and tell you, basically: "Ok, you're fine", or "Hmm, I need these other exams to be sure. Here, take this piece of paper where I describe what I need and get it done". Seriously, we use instant messages delivered to phones all around the world simultaneously to share pictures of ourselves, of our cats, dogs and dinners, just for a giggle. And we can't do it to save lives!

drzaiusapelord 12y ago

>That doctors are (rightfully) unable to pay proper attention to everyone and everything just due to the sheer number of patients they must see. Why are we excusing this? This is an allocation and resource problem. Frankly, I never understood why I need to schedule an appointment with a doctor and also visit a pharmacy to get drugs like anti-acids, allergy medicine, short doses of painkillers, antibiotics, short doses of anti-anxiety drugs, anti-depressants, etc. My doctor spends, what I imagine, most of his time on trivial issues and I sympathize with those who have non-trivial issues. It doesn't seem fair to them that they get the same 30 minutes I get for my minor issues. I think society needs to ask itself if we need a full-fledged doctor for many of these tasks. The politics of healthcare are really ugly. Sorry, but a lot of this level 1 stuff could be done by a non-expert. I should be able to just buy these things. Or, at worst, pharmacists should be able to prescribe this stuff. The system as-is is designed to maximize labor, thus billable hours, for doctors. Its a mess when it comes to actually providing care. I understand there's potential for abuse here but I kinda don't care. In my society you have the freedom to stuff your face with Big Macs 3x a day, smoke, become an alcoholic, and soon smoke pot all day. Those all have major risks and are completely legal and mainstream. Yet when I want to heal myself, suddenly the regulators, rent-seekers, and moralists come out of the woodwork.

webXL 12y ago
Devil's advocate: one man's cure is another's demise. The vast majority of people know how to regulate their consumption of those not-so-bad things, but regulating their consumption of healing technology without understanding the potential downsides is what the powers at be are concerned about. But I generally agree with you, it is an allocation problem, and the best way to allocate resources is removing arbitrary barriers to trade and promoting specialization. We're overly concerned about what might kill us and hardly concerned about improving the overall quality of our lives. The latter makes the former easier to deal with, but the need to feel safe and taken care of trumps freedom, I guess.
- drzaiusapelord 12y ago
  I've had stomach trouble my whole life. It was a Big Deal for my uninsured parents to get me Zantac. It involved a script from a specialist and paying out the inflated cost at the pharmacy. This was done for my safety, afterall, the industry and doctors were worried about risk, right? I'm just a dumb patient. What could I know compared to the experts, right? Zantac can now be gotten OTC for next to nothing. Its completely safe. There was no patient risk for this drug. Same when I had to ask a doctor for Claritin. It also is safe as an OTC drug now. Meanwhile, we have research that shows that even a slight overdose of acetaminophen can seriously damage your liver. The whole system is about maximizing profits for healthcare. It has very little to do with outcomes or patient safety. This is why so many people aren't getting the care they need. The industry is too busy creating "make work" for profits.