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Hurt Society: Planes, Trains & Automobiles — ePatient Travel Edition

My relationship with planes has changed over the years. I remember being little enough to curl up like a cat in my single seat and eventually having to stretch out to put my head in my mother's lap.

Trains have been much more of a novelty. As industry routes and freight trains once loaded with logs and coal have given way to cute touristy things and railway beds reclaimed as greenways, we have lost much of our connection to this great American mechanization.

As an only child, I always had the backseat to myself whenever we took family road trips, which may well be what lead to my penchant for naps, as a set of headphones and a pillow did much to block out the crackling AM sports radio to which my father always listened.

Regardless of the method, it's always held that so long as I have a window and music, I can travel for hours.

When I began flying on a regular basis for my advocacy work, I made one other small investment — ear plugs. I had no idea the difference they would mak…

Hurt Society Blog Carnival Call: ePatient Travel Edition

Fellow advocate HurtBlogger and I have been traveling a lot lately — cross country flights, multiple hotel room nights, long drives, public transportation, business and pleasure. All the travel takes its toll. We aren't always as rested as we should be, perhaps have always eaten the best, have logged too many steps, or carried too many things. But our advocacy work is important enough that we are willing to make certain sacrifices in order to represent.

This week she and I have met in San Francisco for a rare day of rest and relaxation prior to a Medicine X planning session. Although she lives in Southern California and I in Western North Carolina, our meeting comes on the heels of trip to Boston and Philly — her for the American College of Rheumatology and me for the American Society of Nephrology. Catching up this morning over breakfast, we discussed our travels. We didn't focus on sights we'd seen or foods we'd eaten. Frankly those kinds of things are rather low on …

And In The Wilderness A Clearing Emerged

In addition to my work as an advocate, my actual "job" has been as a reporter and editor. I've been in the field professionally since I was 17 (though one could count running the school yearbook and starting a literary magazine as my initial forays). My first employment outside a horse stable was in an university's public relations office. I worked four summers there moving up from the mail room and putting together basic press releases to writing full articles and contracting for assignment work while at college. I earned a degree in journalism with an outside concentration in political science at UNC-Chapel Hill. While there I worked as a writer, desk editor and managing editor of The Daily Tar Heel; wrote for and edited a literary magazine; volunteered for Journalists United to Maximize Potential, a student-run organization that taught middle school students how to produce a newspaper; interned in public relations for the Morehead Planetarium; and interned in publ…

Call for ePatient Applications - Medicine X 2015

Each September since 2012, healthcare's thought leaders and innovators have come together at Stanford University for an unique conference event that gives true meaning to the phrase patients included. Medicine X is an academic medical conference for everyone.

Participants from throughout the industry—clinicians, nurses, researchers, device developers, technology creators, pharmaceutical representatives, designers and others—join activated, empowered and engaged patients. Known as ePatients, these patients are at the forefront of changing healthcare to become more patient­ centered.

Stanford Medicine X is the premiere international convening of thought leaders around healthcare innovation, education, design and patient empowerment. Medicine X has begun accepting applications for full and partial scholarships for patients to attend and speak at the 2015 event.

Full and partial scholarships are awarded to as many as 35 patients to enable their conference participation. Scholarships …

Help Shape the Mental Health Conversation at Medicine X

Mental health too seldom is discussed. There remains a stigma associated with with conditions that impact the brain. Why? The brain has no better protection from illness than the heart or the lungs or the skin, yet we hold it to an entirely different standard. This antiquated philosophy must change—and only will change when we bring conversations about mental health to the forefront.

I am an advisor to Medicine X, a healthcare and emerging technology conference held at Stanford University each September. During and after Medicine X 2013, attendees and those engaging in the conference via the livestream and Twitter feed called for greater inclusion of mental health issues—and we listened. At Medicine X 2014, mental health and psychology weave their way in and out of various presentations. Daniel Siegel, MD will give a keynote speech and lead a 90-minute Master Class on "Compassion, Connection and Engagement: How Health Arises from our Mind, Body, and Relationships." Dustin Di…

Written Upon The Passing of Peter Pan

Those who give us so much sometimes give up too much of themselves. Hearts must receive to survive or they simply bleed out.

Find what fills your heart, what sustains you. Return to it again & again. Turn away from what drains you. You deserve a whole heart.

If you carry a whole heart, seek out those who do not in order to help them. Have the patience to hold another's heart — mindfully.

So much of depression is not sadness. It is emptiness. It is numbness. And self-destruction so often is an attempt to feel anything at all.

Do not think that depression must present itself through tears. It is a chameleon-like beast, hiding in plain sight.

To "struggle" with chronic depression is real as it never ever leaves. It lives with us — sometimes in a cage & sometimes in our chest.

The beast can be tamed. It is DAMNED HARD WORK to do & no one can do it for you. It will be terrifying. It will be worth it.

Once you have the tools to tame depression, you can develop the skills.…

Access Medicine X: Live Stream Brings Silicon Valley Direct To You

Stanford Medicine X is a catalyst for new ideas, designed to explore social media and information
technology’s power to advance medical practices, improve health, and empower patients to participate in their own care. But Medicine X also seeks to engage and empower those unable to attend in person to still get involved in the discussion.

Through Medicine X’s Global Access program, main stage content from the three-day conference will be made available through a high-quality live stream. Anyone with an Internet connection around the world will be able to view keynote speakers such as Daniel Siegel, MD, clinical professor of psychiatry at University of California-Los Angeles and author of The New York Times bestseller Brainstorm: The Power and Purpose of the Teenage Brain, and panel discussions such as Gonzalo Bacigalupe's focusing on the e-health movement and inequality among marginalized populations.

“Medicine X has distinguished itself through a singular commitment to inclusivit…

Design for Your Future, Design for Yourself

Recently faced with making a series of major life changes, a friend of mind decided to apply design thinking principles to his personal situation. He had accepted a fabulous new job that would require leaving the town he loved and long called home for our nation's capitol and doing so in a relatively short timeframe. Familiar enough with D.C., he started his relocation process with the information closest at hand — the dog and the cat were coming with him. And then he interviewed himself.

"I asked myself questions like: self, what kind of place do you want? What should it be near? What do you dislike about your current place? I made Post-Its with my must haves, wants and dislikes," he wrote.

Post-Its are a key component to the process at IDEO—the Silicon Valley design firm where my friend and I have been lucky enough to explore questions that begin "How might we..." and focus on patient-centered solutions within health care. Post-Its allow one to jot down an…

She's Not Here Right Now

Priorities. It's time for me to get mine straight. And right now, my first priority is saying "yes" to the things that matter and "no" to the things that don't.

The problem is that I'm not entirely sure what those things are. The second problem is that I resent having to choose.

Being an advocate is not my primary job. Since becoming an advocate with a very public persona in 2011, I've kept my professional employment and my advocacy work separate. My decision was two-fold. I did not want to accomplish anything as an advocate as a result of my position. (No, I'm the head of The Economist or the like, but my name is unique enough and the magazine widely distributed enough that there are certain circles in which I am known, and it's amazing how many people think they can favor their way into some ink). Secondly, the magazine, which has zip to do with health, is not an appropriate outlet for my advocacy voice. Do I push for historical preservati…

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.

___________
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…