Monday, July 14, 2014

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 idea or make a meaningful doodle that is then both tactile and disposable, preserved but not permanent. From the multicolored confetti came a series of hotel stays in various D.C. neighborhoods to practice the commute to work and sample local restaurants. "In other words, prototypes," he wrote. 

I'd like to say that when I decided to approach my problem of achieving better work-life balance concerning my job as a magazine editor, my consulting and advocacy and my relationships with my family, friends and self that I too reached for my Post-Its and Sharpie. Rather I took a very literal approach to form following function. I made a flow chart, or perhaps more accurately, a decision tree

The goal was to determine what personal parameters I would apply in deciding whether or not to accept an opportunity. Some opportunities offer an abstract pay off while others come with cold, hard cash. Some clearly are worthwhile while others offer nothing by way of joy or enlightenment. For all there is a price to be paid, as saying yes to one thing limits one's ability to say yes to another—doing two things half-heartedly is no greater accomplishment than doing one thing well.

I spent a week on my own posing questions, redirecting arrows and contemplating additional possibilities before I sent my draft decision tree out to a group of personal advisors for review. Advocates praised it. Company managers played devil's advocates. And my friend who was designing his new life first suggested, "Seems like you are really wrestling with getting paid for doing the work you want to do," and then asserted, "Follow your damn dreams."

Following dreams inherently is easier when others believe one's dreams are worth following and thus will help make those dreams come true. I am fortunate in that this is the case for me and my dreams. It is enormously satisfying to know that those in the industry I have come to respect and admire seem to feel the same way about me. Their encouragement, partnered with my own stubbornness, has kept me moving along this path. 

Shortly after completing my decision tree, I had cause to implement its process, and accept a year-long contract to serve as administrator of an ePatient scholarship program that enables advocates to attend one of the foremost health care conferences. I also will be leading a workshop on making clinical trials more patient-focused and speaking at this conference as well as speaking at the world's premier nephrology conference. I have applied for a two-week design thinking internship with the intent of researching generosity in relation to financial giving so as to further develop strategic plans for my nonprofit and to a mindfulness in health care symposium focused on patients and caregivers within palliative medicine. If I am selected, I will consult my decision tree to determine these opportunities' return on investment. If I am lucky, this fall will be busy, financially feasible and personally and professionally rewarding. 

Too often I hear complaints from people who are so overwhelmed by what they have to do that they have no time for what they want to do. I say—put in the time and effort to determine one's priorities, to establish standards such that saying no allows one to say yes to something better. Design not for your current self but the self you want to be. 

Thursday, June 5, 2014

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 preservation and cultural conservation? Yes. Do I call for hospital-acquired infection reduction and patient engagement in clinical trials? No.

Fortunately, my primary job also is a part-time job. An argument could be made that a publication having only a part-time managing editor is less than optimal. I would agree with that argument. However, I also have greatly enjoyed my freedom to come and go as I please and never be shackled to an office or office hours — so long as deadlines were met and I could be found via email or a phone call. Whenever I travelled for advocacy purposes, I took my real work with me. The magazine tagged along from Paris for Doctors 2.0 & You to the Metro in Washington, DC for Rare Disease Day, from Vancouver, Canada for B.C. Renal Days to Cleveland, OH for the First International FMD Research Network Symposium, from Palo Alto, CA for Medicine X at Stanford to Kansas City, MO for Partnership With Patients. Sometimes I even carried on the latest print edition to strategically leave in some airport in the hopes that its presence and the boredom of a long layover would lead to a new subscriber. In that regard my part-time job has been an all-the-time or any-time job. There is not a day or a time at which I could not be working on it.

I'd imagine that most people have such jobs — jobs that occupy the mind even when they do not occupy the hands. I hear rumor of people who go to an office, put in a solid 8 to 5 and leave it all behind when they walk out the door. I am not those people. However, t was one job I had — a test proctor for state licensing exams — that was so grinding, so regimented, so much a matter of process over product that proctors vehemently were discouraged from expressing a modicum of joy or sympathy for a test taker when he or she passed or failed. Test takers were not allowed to use their own writing utensils, wear hats, wear bulky clothing, eat or drink or take breaks longer than five minutes, during which time they were allowed to stretch, so long as they remained within my direct line of sight, and use the restroom (quickly). The test we administered most frequently lasted five hours. Work days were unpredictable, their length determined in part by the type of tests given but more so by the test takers themselves. Some days it was a push to clock an hour and half. Others stretched on for 10. I lasted nine months before the $9 an hour just wasn't worth it any longer and I walked out the door.

I've found myself in the position of determining a job's worth once again. Worth is about more than money, but when there's not much money to spare, money takes a dominate role in the equation. Certainly I want to be happy. I also want to continue to have a house. Having a house makes me happier than not having a house. Having groceries makes me happier than not having groceries. Thus having a job that pays makes me happier than not having a job that pays. And the job that pays is the job I have — not the mythological advocacy job upon which, I confess, I have been hoping to stumble. Advocacy is a word that I am using broadly to characterize this work for which I did not go to school, this proclivity for all things health care related, for fostering the patient voice in medicine. This isn't about waving around a colored flag and issuing a list of complaints. This is about getting elbow-deep in the quagmire of policies and prejudices to search for answers that can help change the system. This is about listening, analyzing and doing. This is about the Kingdom of the Unwell and the Kingdom of Healers laying down arms to unite as the Kingdom of People.

For me, to be able to help someone, to be able to make change for the better, to be able to collaborate with people who are passionate about making a difference too is worth so much more than money. I've found more meaning in my life in health care (and teaching) than I ever have in publishing.

For some, this greater personal depth and purpose in life clearly would indicate a need to leave the publishing world behind and transition to being an advocate full-time. But the power company doesn't accept payment in warm and fuzzies. The resolution then is to flip the predicament — rather than lament that doing what I love does not pay, how can I make what pays into something I love? Can I implement changes such that I see as much value in my job as I do my advocacy? Can I make it worth it?

In order to give more of myself to my job, I must give less of myself to my advocacy. To have less of myself to give necessitates that I make more strident choices about how I spend my time and energy. Effective Monday, June 9, and until further notice, I am suspending all advocacy work and related social media that is not specifically related to Medicine X or my own organization, FMD Chat.

It is my hope that this self-limitation will allow me the mental and emotional capacity to return to writing, which I love, and thus my individual voice will not altogether be silenced. So please look for me here.

Should you wish to contact me, please do so by blog comment or email

Or... make me an offer I can't refuse. 

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

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.

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.


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.