Boston Globe Medical Mystery

HM Epstein hmepstein at GMAIL.COM
Mon Dec 18 17:54:53 UTC 2017

Iā€™d like to see all studies on improving diagnosis or measuring diagnostic
error include a feedback loop with the patients. The ultimate judge of
whether or not the patient was properly diagnosed is the patient. Did they
improve? If not, why? And if they were compliant and didn't improve, did
they go for a second opinion or switch practices or are they still
suffering, untreated, or did they die? Of course, any feedback loop would
separately classify patients diagnosed with a terminal or progressive
disease that can't currently be cured. (On the other hand, i personally
know dozens of people diagnosed with terminal or progressive diseases who
chose not to accept the diagnosis, learned they were misdiagnosed, finally
identified the correct Dx, and are now fine.) I am advocating for this on
all of the panels I serve. I would love to see it as a mandate for all SIDM
supported or sponsored or guided research.

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On Sun, Dec 17, 2017 at 3:49 PM, Edward Hoffer <ehoffer at> wrote:

> Today's Boston Globe had a special magazine on medical issues. Lead story,
> on P2, is a dramatic story of a young man whose debilitating illness took 8
> years to be diagnosed. Clued strongly by the fact that this was an obscure
> disease, I guessed it after reading the first paragraph. More importantly,
> putting the symptoms from the first paragraph and one from the third into
> both DXplain and Isabel gave the diagnosis (#1 on DXplain list, #7 and
> red-flagged on Isabel's)
> When will such "second opinions" become mandatory?
> Ed
> Edward P Hoffer MD, FACP, FACC
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> Moderator:David Meyers, Board Member, Society for Improving Diagnosis in
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Moderator: David Meyers, Board Member, Society to Improve Diagnosis in Medicine

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