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Showing posts from February, 2014

Stanford Medicine's Engage & Empower Me Course: Code Talking Patients & Providers

I had the great privilege of speaking to students in Stanford Medical School's Engage & Empower Me: a course on patient engagement design on Feb. 20, 2014. What follows is the text from my speech, which preceded a conversation with Dr. Roni Zeiger and Gilles Frydman, co-founders of online community, Smart Patients.  ___________
From 1942 to 1945 the U.S. Marines relied on Navajo Code Talkers to relay secret messages about the war on the Pacific front. The Navajo language was complex and unwritten. Meanings changed based on syntax, tonal qualities, and regional dialect. In order to translate the language into a workable code, 29 Navajo recruits were brought to Camp Pendleton in Oceanside, California, and tasked with creating a dictionary and words for specific military terms. A seemingly unrelated string of Navajo words, translated to their English equivalents, created the Marines’ secret messages. The code never was broken.

Healthcare providers are no strangers to code talki…

#HCSM Review - Feb. 13, 2014, #RareDisease Edition

The Feb. 13, 2014 edition focuses on Rare Disease Day, an annual, awareness-raising event marked around the world that aims to educate the general public and decision-makers about rare diseases and their impact on patients’ lives. Rare Disease Day will be held on Feb. 28.

A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2,000. There are approximately 7,000 rare diseases. The lack of scientific knowledge and quality information on rare diseases often results in a delay in diagnosis and difficulties accessing appropriate care.

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Living in the Light — from Levi Gershkowitz
"These narratives are shared by individuals facing the challenges of life affected by rare genetic disease. They are aimed to promote an increase in public awareness about the prevalence of rare diseases, as well as an increase in patient advocacy."

MODDE…

#HCSM Review - Call for Submissions, Feb. 13 Edition, #RareDisease

The Afternoon Nap Society will once again be hosting HealthCare SocialMedia Review, the blog carnival for those interested in health care social media.

The Feb. 13, 2014 edition will focus on Rare Disease Day, an annual, awareness-raising event marked around the world that aims to educate the general public and decision-makers about rare diseases and their impact on patients’ lives. Rare Disease Day will be held on Feb. 28.

A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2,000. There are approximately 7,000 rare diseases. The lack of scientific knowledge and quality information on rare diseases often results in a delay in diagnosis and difficulties accessing appropriate care. 
Bloggers around the world are encourage to submit their blog posts for consideration. Posts should focus on some aspect of rare disease such as a patient's ex…

Staircase Wit Leaves Us All Cold

Snow had fallen through the night, blanketing the mountains with an inch or more of glistening white. It was the kind of day best spent at home, but an appointment required that I drive to town.

I stopped at a gas station along the way. The station is near the corner of where my parents almost bought a house and not too far from where they actually did. It's open most hours of the night, perhaps even all 24 of the day, and is thus one of my regular stops.

A young man wearing an oversized black jacket and black knit hat pulled tight over his heat was standing directly inside the store's double doors, talking on his cell phone, as a middle-aged, female attendant mopped up melted snow from entryway. I grabbed some Reese's Cups and went to the counter to pay.

The attendant put her mop and bucket away, came to the register, opened the drawer, and began to count her cash. There wasn't much there—a twenty or two and a dozen one dollar bills for which she ran a receipt that she…