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Generally, I appreciate it when people with a condition or a risk factor speak out. I look forward to a day when diseases of all kinds are de-stigmatized, and e

Generally, I appreciate it when people with a condition or a risk factor speak out. I look forward to a day when diseases of all kinds are de-stigmatized, and each voice helps. Curiously, I went to fill out the survey linked from Larry's post, and after I indicated that I don't have vocal cord paralysis, the survey was over for me. Somehow, I'm surprised they weren't interested in collecting denominator / negative information from those without the condition.

cantrevealname 13y ago
> after I indicated that I don't have vocal cord paralysis, the survey was over They're not collecting information from people without the condition. This is simply their way of getting rid of people who shouldn't be filling in the survey. I think it's actually a reasonable UI decision. They could have done it one of two ways: 1. Have the page say, "Fill in the survey ONLY IF you have the condition". 2. Anyone can fill in the survey. But the first question determines whether you are a candidate or not. They chose #2.
- carbocation 13y ago
  Yes, it's a nice UI decision. I'm surprised by the business decision. My feeling is that there is often value in collecting information on people without the condition (negative data), should those people somehow feel compelled to participate.
  - bcoates 13y ago
    I think they realize that the survey prompt is self-selecting enough that they can't get a valid sample of non-sufferers through it, and will have to go elsewhere for a baseline.
  - interurban 13y ago
    I generally agree, but this might be a case where there's already a lot of information about people without the condition and as he says, very little about those with it.
  - OGinparadise 13y ago
    It's possible that for now he wants to hear the story only from people with his exact condition and symptoms. Let's face it, he's probably panicking (and for a good reason) so he wants to find out what he can do, if anything. No doubt he'll open his wallet and for research that will help others that still haven't had the vocal cord issue.
- newman314 13y ago
  Interestingly, VHI does research into other voice issues. http://www.voicehealth.org/research.php http://www.voicehealth.org/research.php However, the survey does not give you the option to select for other conditions say, RRP. http://www.voicehealth.org/research.php#rrp http://www.voicehealth.org/research.php#rrp One would think that they would try to capitalize on the publicity of Larry's post to try to gather as much data as possible for various conditions and not just vocal cord paralysis.
mcintyre1994 13y ago
Usually marketing surveys and things will ask for demographic details before they give you the splitting question(s) to determine if you're a fit. I guess they're not really interested in that in this case. Larry did say " we’ve put together a patient survey to gather information about other people with similar conditions" so I guess it is exclusively just to try to gather some data about the issue.
RivieraKid 13y ago
In what way do you think diseases are stigmatized?
- carbocation 13y ago
  There's a pretty large literature on the topic. I'm going for a run but would encourage you to check out 'disease stigma' (not stigmata, which would yield a different set of results!) on your favorite search engine.
- ebrenes 13y ago
  Just yesterday I was talking with several people who head organ donor foundations (seeking to aid those who require an organ donation). One of the things they mentioned was how hard it was for both donation recipients to find a job after their respective medical procedures. It appears they have to follow strict medical checkups after the operation and thus have to leave work to attend these appointments. As such, many are denied jobs or are conveniently fired from their positions. And even though the law protects them from some of this discrimination it's hard and expensive to prove the discrimination.

cantrevealname 13y ago

> after I indicated that I don't have vocal cord paralysis, the survey was over They're not collecting information from people without the condition. This is simply their way of getting rid of people who shouldn't be filling in the survey. I think it's actually a reasonable UI decision. They could have done it one of two ways: 1. Have the page say, "Fill in the survey ONLY IF you have the condition". 2. Anyone can fill in the survey. But the first question determines whether you are a candidate or not. They chose #2.

carbocation 13y ago
Yes, it's a nice UI decision. I'm surprised by the business decision. My feeling is that there is often value in collecting information on people without the condition (negative data), should those people somehow feel compelled to participate.
- bcoates 13y ago
  I think they realize that the survey prompt is self-selecting enough that they can't get a valid sample of non-sufferers through it, and will have to go elsewhere for a baseline.
- interurban 13y ago
  I generally agree, but this might be a case where there's already a lot of information about people without the condition and as he says, very little about those with it.
- OGinparadise 13y ago
  It's possible that for now he wants to hear the story only from people with his exact condition and symptoms. Let's face it, he's probably panicking (and for a good reason) so he wants to find out what he can do, if anything. No doubt he'll open his wallet and for research that will help others that still haven't had the vocal cord issue.
newman314 13y ago
Interestingly, VHI does research into other voice issues. http://www.voicehealth.org/research.php http://www.voicehealth.org/research.php However, the survey does not give you the option to select for other conditions say, RRP. http://www.voicehealth.org/research.php#rrp http://www.voicehealth.org/research.php#rrp One would think that they would try to capitalize on the publicity of Larry's post to try to gather as much data as possible for various conditions and not just vocal cord paralysis.

mcintyre1994 13y ago

Usually marketing surveys and things will ask for demographic details before they give you the splitting question(s) to determine if you're a fit. I guess they're not really interested in that in this case. Larry did say " we’ve put together a patient survey to gather information about other people with similar conditions" so I guess it is exclusively just to try to gather some data about the issue.

RivieraKid 13y ago

In what way do you think diseases are stigmatized?

carbocation 13y ago
There's a pretty large literature on the topic. I'm going for a run but would encourage you to check out 'disease stigma' (not stigmata, which would yield a different set of results!) on your favorite search engine.
ebrenes 13y ago
Just yesterday I was talking with several people who head organ donor foundations (seeking to aid those who require an organ donation). One of the things they mentioned was how hard it was for both donation recipients to find a job after their respective medical procedures. It appears they have to follow strict medical checkups after the operation and thus have to leave work to attend these appointments. As such, many are denied jobs or are conveniently fired from their positions. And even though the law protects them from some of this discrimination it's hard and expensive to prove the discrimination.