Thread by @ePatientDave

@MarkGraban @evanluxzenburg So, this is where a savvy patient community can make all the difference. Problem is, not all diseases have savvy communities. My own incomplete cobbled list on my site: epatientdave.com/communities

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@MarkGraban @evanluxzenburg Remember "the lethal lag time" - chances are very good that the 3 docs have different views of "latest / best information" epatientdave.com/2019/12/18/pri…

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@MarkGraban @evanluxzenburg Then there's the nasty practical reality that surgeons & their friends often recommend surgery just Because. See @ElyseInOz e-patient origin story participatorymedicine.org/epatients/2009…

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@MarkGraban @evanluxzenburg Then there's the brilliant example of Judy Feder (also in 2009!), who found invaluable info in 4 patient communities that did NOT exist in medical literature, extending her life 18 months. participatorymedicine.org/epatients/2009…

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@MarkGraban @evanluxzenburg My surgeon saved me with laparoscopic nephrectomy. (I didn't have time for the extended recovery of non-lapo.) Years later he said many surgeons can't do lapo AND WON'T TELL PATIENTS IT'S AN OPTION ELSEWHERE. Perfect argument for what you're doing: asking around.

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@MarkGraban @evanluxzenburg Plus, lit may not be aligned w patient values. @HJLuks used spectacular method on my wife's knees dave.pt/ginnyknee (she was playing mini golf in 17 days), a method most docs don't know; the only article about it says "who cares" because pt status was same A YEAR LATER.
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@MarkGraban @evanluxzenburg @hjluks IOW, some journal editor (and all the peer reviewers!) agreed with the author that the usual method's SIX-TWELVE MONTHS OF PAIN were unimportant! Damn sure nobody asked a cohort of patients about that!

So yes, you're right to research yr options & set your own priorities.

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@MarkGraban @evanluxzenburg .@ThreadReaderApp unroll (even though I'm (un)rolling my own, in this case)

@MarkGraban @evanluxzenburg Oh, and never forget that the entire reason @ABIMFoundation & @ConsumerReports created #ChoosingWisely is because so many specialties have traditions that, intentionally or not, favor the specialists more than they favor the science or the patients.

So yeah dude, keep wising:-)