Anyway, last night I was doing an online study, and it asked me how many Duchenne's patients I've seen in the last year. I said zero.
So the next question...
Friday, September 23, 2016
The power of zero
Anyway, last night I was doing an online study, and it asked me how many Duchenne's patients I've seen in the last year. I said zero.
So the next question...
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8 comments:
I regularly get surveys where there is no appropriate answer to a question, eg 'None of the above'.
Yesterday I indicated that I don't smoke so the next question asked how much I smoked with answers ranging from '> 20 a day' down to 'I only smoke occasionally'. Facepalm!
Ah, love the logic of very bad programming.
Not that this has anything to do with your post, but - a good friend of mine has a son who is 11. He has Duchenne's. He is already unable to walk and uses a power chair to get around. They were so excited last week when the FDA approved that drug that might help with Duchenne's, but then found out that the type of gene mutation that caused his Duchenne's does not respond at all to that particular drug. There is another drug, apparently, that shows promise, but it is not available in this country. It is, however, in use in the UK, but they can't get there. Sadly, time is running out. Horrible disease.
It's so frustrating that a drug or treatment can be approved for use in Europe and used safely for years (if not decades) and the FDA will refuse to allow it in US. I remember when implantable contact lenses were first introduced in the US, they were only approved up to 4 diopters (I needed 12). They were using lenses up to something like 16 diopters in Europe (and had been for about a decade) because they are the same material and held in place using the same materials and techniques, so no eye doctor I knew understood why the FDA had imposed a correction limit.
When I first read the name of the post, it reminded me of the songs on Sesame Street or some other children's program and all that hype about one or two or three etc as a magic number, or Count von Count and his magic number of 34,969.
It's bad enough to have to respond to surveys with but one of a limited choices of answers, but I also disliked having to make a decision to answer one of the questions on a patient's electronic medical record template, until I found out I could just skip the question.
I am sorry to hear about the young boy, a pre-teen, with Duchenne's.
I wonder how the Zuckerberg's desire and monetary support of the anti-disease initiative will work out by the end of the 21st century.
It isn't that surprising. There is far more programming that needs to be done than there are competent programmers to do it, and there is not likely to be extensive QA for such a program. The worry is that things can be overlooked in critical systems. A classic example of the latter was a radiotherapy device of some sort (I forget which) that injured patients with overdoses.
It was the Therac-25. Look that up to see what poorly designed software can do.
LOL
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