Sunday, February 23, 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
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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 talking. The ICD-9 tells us that 268.9 is an unspecified Vitamin D deficiency, while 728.96 indicates necrotizing faciitis. Patient summaries may include NKA (no known allergies), PVD (peripheral vascular disease), or FTT (failure to thrive). Such numbers and abbreviations mean little to nothing outside the medical office, but to providers, they are a means to quickly communicate about a patient.

But patients are code talkers too. We speak in code to our families, to our medical providers, and to one another. And like the Navajo, our words’ meanings undergo subtle changes in context.

Consider the word — tired. Does it indicate a need to nap or muscles weak from physical exhaustion? Does its meaning include mental fatigue or emotional anguish? Frustration, anger, or fear? Does it indicate having given up? Does it mean acceptance of the inevitable?

As a patient, it means all those things to me, which is why I have a hard time even saying it — “I’m tired. I… am tired.” The very act of uttering the phrase makes my shoulders droop as if in defeat. To be tired, to admit to being tired, is to admit that the weight of life and what feels like a struggle simply to stay alive is a burden that I need help to carry.

I’m tired.

It’s also what I say when I don’t feel like saying anything else, when the full litany of ailments and aches, work and personal demands is just too much to explain. It’s what I say when I want to be left alone, when I’d rather allow the assumption that it’s nothing more than a late night or an early morning that’s gotten me down.

But my fellow patients know my code. They know it because while our illnesses, procedures and medications may not be the same, we still have shared experiences, and these unifying experiences are what give us the empathy to understand the meanings that lie below the surface. My fellow patients are anything but impartial, objective observers in this experiment of life. Their subjective view has been informed not only by textbooks and statistics, medical journals and clinical trials but by the brutal truth of living with disease. Some may thrive and some may die, but if you listen closely to their code, they are telling you how much words like A1C and metastasis can really mean.

Doctors, you must not only hear your patients’ words but listen for their context. When the father of four with a cardiac history makes an excuse and says he’s been busy, ask him about his life’s priorities. Your non-compliant patient may lack the support he needs at home to make serious changes. When the teenager with Crohn’s disease isn’t following through with medication management, ask her about coping with an invisible illness in a social environment.

Patients, work with your doctors to translate your needs and theirs. Help them provide their best level of care, as they cannot treat what you do not disclose. Understand that you, as the sole occupant of your body and your life, are therefore your own best advocate.

Together we have the knowledge and experience to break one another’s secret codes and instead learn to speak the language of compassion. One’s health is defined by more than tests and measurements. It is a complex series of events that requires deep analysis of physiological, sociological, and psychological factors to understand. Health substantiates our being as creatures made whole through treatment of body, mind, and soul.
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Thursday, February 13, 2014

#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."

MODDERN Cures: Who, What, and Why? — from Amy O'Connor
"More than 30 million Americans live with a rare disease, many of which have few or no treatment options. But there’s hope on the horizon. Public policies like the MODDERN Cures Act could incentivize the development of treatments and cures for unmet medical needs - such as autoimmune diseases, neurological conditions, cancer, and rare diseases."

#RarePOV Conversation Generates Strong Enthusiasm for RDD — from Stephanie Fischer
"Recap of last week’s #RarePOV tweetchat during which leading rare disease advocacy organizations and individual patient advocates came together to share resources and plans for the upcoming international Rare Disease Day. More than 100 individuals and organizations participated, generating more than 680 tweets in the hour-long conversation."

One in Billions: Rare Disease Day 2014 — from Emily Bradley
"One rheumatologist explained to me that treatment options for many rare disease patients sit, waiting, behind an “unbreakable glass wall.” Patients suffer for years—many die—because they cannot afford the few treatments available. With just enough income to keep me at the poverty line, I was unable to receive full funding assistance. I fought for that medication the way I fought to get out of bed. I fought to find resources, help, anything, anyone, while I also fought to brush my teeth every morning. I found myself constantly internally screaming, why does no one fight for me or with me?"

Rare Diseases 2.0 - A Business-Oriented Blueprint for the "RARE" Universe — from Yoni Maisel
"Collectively we have gained the attention of those who can influence and impact our futures. Opportunities exist like never before. But with almost 7,000 Rare Diseases, there will not be opportunity for all."

Para...what? — from lovehopeandcourage
"In March our eldest daughter Tayla, who was just 12 at the time, was diagnosed with a rare neuroendocrine tumour called a Paraganglioma, a Para what I hear you say…exactly! This is something we were never, ever expecting or would have ever dreamed of going through, again."

Treating illness and preventing disease with genetic testing — from The Conversation
"Genome sequencing has the potential to improve the diagnosis of conditions caused by changes in the DNA and indicate what treatments may be most effective. Importantly, it may also red-flag treatments likely to cause adverse reactions."

Dr. Groft of NIH on New Hope for Rare Disease Research and Treatments — from PhRMA
"While there has been amazing progress, the road ahead is still at times daunting as we strive to find better, quicker and less expensive methods to translate research discoveries into new interventions that meet safety and efficacy requirements. The encouraging news is that the rare diseases community appears stronger than ever, and there has been no better time in history to build on existing momentum and resources."

What are the biggest challenges for the rare disease community in 2014? — from pharmaphorum
"Patients can't benefit from new treatments and other medical advances if they can't get an accurate diagnosis. And diagnosis clearly remains an issue for the rare disease community."

Two Children, One Rare Disease and Their Mother Who is Making a Difference — from Parade
"Jana Monaco misses memories of what might have been. Her son’s first day of kindergarten. His Little League games. Prom pictures. The life experiences we all take for granted ended abruptly for Stephen Monaco almost 13 years ago when a rare disease, isovaleric acidemia (IVA), left him permanently disabled, both physically and intellectually, at the age of 3."

Advocates Fight for Justina Pelletier, Teen Held by State in Psych Ward — from ABC News
"Justina was diagnosed with somatoform pain disorder, a psychiatric condition when a person experiences physical pain for which no known medical explanation can be found, according to her family. The case highlights a growing concern among those with rare diseases and autoimmune disorders that physical symptoms that cannot be explained will be dismissed by doctors as psychosomatic."


Look to Mary Pat Whaley at Manage My Practice for the next #HCSM Review on March 5, 2014. 

Friday, February 7, 2014

#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 experience; a provider's difficulty making a diagnosis; pharma's burgeoning rare disease drug market; social media's role in connecting patient communities; or access to research funding.

Want to participate in recognizing Rare Disease Day in another way? Join in the Raise and Join Hands Movement

And if you read nothing else about rare disease, read Lisa M. Jarvis' "Orphans Find A Home" from Chemical & Engineering News. 

To submit a blog post to the Feb. 13 Edition of #HCSM Review, email theafternoonnapper (at) gmail (dot) com with the following information:

Email Subject Line: HealthCare SocialMedia Review
Blog Title:
Blog URL:
Post Headline:
Permanent Link To Post:
Name, Username, Nickname, or Pseudonym:
Description or brief excerpt:

Deadline for submission is WEDNESDAY, FEB. 12 at NOON (Eastern Time). 

Thursday, February 6, 2014

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 tore from the register and slipped inside a clear envelope along with the bills and then deposited the sum in a dropbox on the counter behind her. The young man walked outside. The attendant looked past me through the glass door. She apologized for making me wait, but the young man on the phone was having trouble. He needed kerosene, presumably for a heater, given the weather; however, his bank card wouldn't allow for an overdraft to buy it, she told me as she rang up my Reese's Cups. The young man had said something about needing the kerosene badly enough that he might "have do something he shouldn't do" in order to get it.

I pondered the attendant's words for a few seconds. At first, I imagined she meant the young man would fill his kerosene container and drive away without paying. Then I realized that she feared the young man would try to rob her. Rather than call the police, rather than lock the door behind the young man after he'd walked out, she simply had emptied her register so there wouldn't be any cash for him to steal.

"I'll stay here with you if you want," I said.
"Nah, people are still coming in," she said, once again looking past me out to the parking lot where the young man was sitting in his car, still talking on the phone.

I paid for my Reese's Cups and walked to my car, which was parked next to the young man's. I took my time buckling my seat belt. I peeled apart the crinkly, orange candy wrapper and slid a single peanut butter cup into my palm. I peeled the dark brown liner away from the chocolate. I took a nibble, and I watched. The young man appeared, more than anything else, cold. The attendant opened the store's front door and leaned against the stuccoed wall as she took a nervous drag off a cigarette. In my review mirror, I could see three other male customers busy gassing up their pick up trucks or cleaning salt from their windshields. Slowly I backed out of my parking space and headed on up the road.

As I drove, I contemplated what it must feel like to be a woman working alone in a place that's prone to draw criminal behavior. Though the gas station was in a good enough location, working as an attendant hardly qualifies as low-risk employment. There's a reason those places have security cameras and it's not to make sure the Little Debbies don't run away with the Slim Jims.

I also contemplated the small yellowish deposits on the station attendant's eyelids and whether or not I should have asked her if she knew about her hypercholesterolemia and should probably see a doctor about it.

And I thought about the weather. It was 18 degrees in the sun, and anyone without heat indeed would be desperate enough to do something stupid.

I was probably a mile down the road when I realized that I had the power to diffuse the situation and possibly impact the future. Though not well off, I certainly had $25 I could use to buy the young man some kerosene. I could do it quietly—just walk inside, tell the clerk to ring up the purchase, pay for it with my debit card, and walk out. I could wave to the young man in his car, tell him he could get some kerosene, and that I hoped it helped keep him warm. I imagined this little act of kindness would teach the young man about compassion and life choices. I imagined that the attendant wouldn't feel as afraid.

Although I was three-quarters of the way home, I turned onto a side road, hooked a sharp left, and headed back to the gas station, peering through my increasingly obscured and salt-speckled windshield. Traffic was slow through the wintery slush, and as the minutes ticked away, I became increasingly certain that the young man either would have gone ahead and done something stupid as the attendant feared he would—or just driven away.

And I guess that's what he did. When I pulled up to the gas station, the young man's car was gone. The scene seemed undisturbed. I was relieved, yet I regretted not having turned around sooner. No one needed to be without heat. No one.

I circled through the parking lot, and I imagined the attendant looking up from her register, past whichever customer was at the counter, and through the glass doors at just the right moment to see me slowly driving past. Would she think I had come back to save her or only to save myself the guilt of having walked away?

I doubt either one of us knows.