9:45 - 10:05 amSaturday, September 28
LK 130
Past the horses and to the zebras: ePatients, technology and the potential for earlier diagnoses of rare diseases
LK 130
Past the horses and to the zebras: ePatients, technology and the potential for earlier diagnoses of rare diseases
Leader, Northern California Neuroendocrine Cancer Fighters
Katherine Arbanasin is an e-patient whose career as a research scientist was cut short after she became disabled with the symptoms of a rare and relatively slow growing cancer that was not diagnosed until... Read more

Description

Katherine Arbanasin is an e-patient whose career as a research scientist was cut short after she became disabled with the symptoms of a rare and relatively slow growing cancer that was not diagnosed until years later.  Her cancer is one that if caught early enough can sometimes be cured by surgery.  She now lives with chronic illness and receives treatment every two weeks that some centers bill at about $80,000 per treatment. The aim of reducing the human and economic burden of delayed diagnosis forms the basis of some awareness efforts for specific diseases.  Is the problem, however, that every doctor does not keep details about every rare disease in his head or is it sometimes something else? The doctor, often not a specialist, is trained to look for horses first when the patient comes in with symptoms looking for answers.   The doctor sometimes stops after going through the horses and may look no further to the zebras, the rare or uncommon diseases.  The doctor may even dismiss the patient’s concerns after the horses are eliminated.   This can lead not only to delayed or missed diagnosis but damage to the physician-patient relationship. How does one get past the horses to the zebras when the zebras are there?  Dr. Arbanasin examines how patient and doctor could each use existing or emerging technologies to help each other potentially get to earlier diagnosis of rare diseases and maybe even not so rare diseases.

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