08 December 2013

Patients, Pharma, Partners

Generally speaking, I had always wanted to beat Big Pharma with a stick. I had no personal reason to feel that way. In my vast history of patient-being, I'd never had a particularly negative pharma experience—what's been prescribed has worked with no real side effects save for some fatigue and nausea here and there. Smart patients don't just swallow their pills. They research, learn the side effects and interactions ahead of time, and discuss with their doctors the impacts. Moreover these patients tend to see Big Pharma's advertising and drug reps not as sources of education but as shill. This perception has not been about which pharma company but rather it has been of all pharma companies.

Enter Jerry.

I'd heard rumor that there were pharma guys in attendance at the Partnership for Patients conference in Kansas City, MO. I was distrustful but curious, so it was between sessions that I caught Jerry's ear. Nothing about Jerry fit my pre-conceived notion of Big Pharma. He had a liberal arts degree—A LIBERAL ARTS DEGREE! And thus my curiosity got the better of me, so I joined him, his cohorts, and a small group of my fellow patients in a discussion about the clinical trials process. Jerry made introductions and explained the concept behind the Clinical Open Innovation team. How strange, this pharma group wanting to listen to patients! And indeed they did listen, not as Big Pharma (because frankly I still doubt that Big Pharma is capable of listening) but as humans. So I did something that I don't tend to do. I decided to trust, and specifically I decided to trust Jerry.

Patient advocates work in a troubled environment. We need acknowledgement and help from the very system we are trying to change. As a result, and as a result of human fallibility, patient advocates thus end up in relationships in which they are bought or simply used. At least those advocates who are bought, receive compensation for their work, while those who are used fall prey to flattery: I respect your opinion, now hawk my product. I recently had such an experience in which an app developer with an extensive Ivy League education continually asked me to "spread the word" about his app. I asked him to delineate exactly what he meant by "spread the word," as my time increasingly was limited and I was being forced to choose among projects that would or would not have a clear benefit for me. I asserted my worth—as an advocate, as a patient, as a person—and he suddenly stopped interacting with me.

However, Jerry always has been respectful of my time and energy. In the year that followed after meeting Jerry, he continued to reach out, and each interaction bore his continuity of authenticity. He went out of his way to maintain contact and ensure that my voice was being heard. We didn't talk Eli Lilly. We talked patients. My trust never was disappointed, instead it continued to grow as Jerry bought in to my own mission with Medicine X—a conference about medicine and emerging technologies held at Stanford University—and recruited company employees to attend what I billed as the most transformative medical conference in existence. It was a joy to plunder through MedX's Flickr stream from the IDEO Design Challenge to find a picture of Jerry in a wig, acting a part in a skit demonstrating the patient-centered solution to a patient-generated problem his team had helped devise. He was not only in, he was all in, so as plans developed to bring patients to Eli Lilly's headquarters, I too was all in.

Though my opinion of Eli Lilly had shifted, I was nonetheless keenly aware of my role in infiltrating the belly of the beast as I pushed through the revolving glass door at the company's headquarters in Indianapolis. Company headquarters say so much about corporate values. Instead of shiny black marble and self-congratulatory monuments, natural light, real plants, straight lines, and colorful but natural tones characterized the building. We convened in a perfectly normal room—no pomp, no excess, no board room tables or over-stuffed office chairs—and as comfortable as it all seemed, it continued to be. There were three times as many Eli Lilly employees as patients, an indication not of our exclusion but of the perceived value of our inclusion. In making their introductions, company employees shared more than a name and a title. They shared of themselves, and then they too, as Jerry had done time and time again, listened, and they asked questions, and they listened some more. What’s more is that through some miracle of persistence and possible soul selling to the corporate legal department, we patients were allowed to share our experience in real time via Twitter such that even more people were drawn into the conversation about how to make clinical trials more patient-friendly.

On one hand, I don’t know what we achieved. We didn’t solve the world’s problems when it comes to getting more patients involved in research and making research findings more open and accessible to the public. However, according to a blog post from Eli Lilly’s Clinical Open Innovation team—a post Jerry authored—there will be more workshops like the one I attended, workshops that rely on collaboration to improve the process.

Too many relationships within healthcare are adversarial. By classifying friends and enemies, we add bricks to the very silos we are attempting to break down. While it is inevitable that our goals will not always align, we must open ourselves to conversations that discover likenesses while exploring ways to resolve our differences.

Author's note: Gerald J. Matczak 54, Indianapolis, passed away Feb. 2, 2017. He was a Clinical Innovation Lead Consultant at Eli Lilly & Co. He was a member of Traders Point Christian Church and the Indianapolis Ambassadors. His father Gerald J. Matczak and brothers Joseph S. and Daniel T. Matczak preceded him in death. Survivors include longtime companion Nancy J. Miller; his mother Donna Matczak; sister Sharon Staunton; niece Chelsea Marks, nephew Michael Kristophel and their children. Visitation will be from 4-7pm Mon. Feb 6 at Matthews Mortuary, Brownsburg, with funeral services there at 10am on Tues. Feb. 7.

08 October 2013

Crowdfunding Creativity

For as involved as I am in the national (and, at times, international) healthcare social media community, I find myself in a local void. The mountains I call home are not the epicenter of anything to do with healthcare or social media much less the two together. I've been chipping away, trying to carve out a foothold such that the wealth of education and opportunity found in healthcare and social media can enrich the lives of those I routinely connect with in real life as it has my own. It's slow going. Every fear, every socio-economic force that pushes back against the #hcsm tide can be found here. But today... today made a new friend.

As like minds are prone to do, @SociallyMD and I connected first via Twitter. Lo and behold — we live a mere 20 minutes apart. Prior to departing for Stanford's Medicine X conference, I suggested that since we were the only two Tweeps occupying the local #hcsm space, @SociallyMD and I should meet. And meet we did, instantly connecting professionally and personally and taking up much longer than the allotted lunch hour. I was, in a word, joyous to have found a compatriot.

However, my new found friend issued an unexpected challenge. As we talked about my MedStartr project to crowdfund studying at Columbia University's Narrative Medicine program in November, @SociallyMD shared with me about his own creative endeavors — healthcare was not his first love — and how personal changes forced him to find new ways to be creative. My curiosity was piqued. How does one go about finding new ways to access his or her creative sweet spot? His response shook my confidence the way one shakes the dust from a rug, "If you think you're so creative, why don't you find a new way to be creative?"

His statement rolled around in my head for most of the afternoon and evening before I realized a link to my experience at the design and innovation consulting firm, IDEO, in Palo Alto in 2012. Founder and ingenious devisor extraordinaire Dennis Boyle led a tour through the company's offices, explaining the IDEO philosophy and from where designers look for inspiration. Boyle said that it's the "have nots" who bring the most ingenuity to the world — those who need to accomplish a task without having the resources they need. In the grand scheme of things, I consider myself to be among the privileged in the world. I have shoes. I have running water. I have a microwave. I have a roof and a bed and an education. I also have friends — friends some of whom I've never met but who believe in me and my desire to go, to do, to learn, to change.

All these things I have are what will enable me to find a new way to be creative. With your help I am honing the tools of my trade from within.

Project Columbia - 25 days and $1,395 to go!

26 September 2013

Out of Place, In Our Element at Medicine X

I don't remember the flight to San Francisco the first year I went to Stanford for Medicine 2.0 conference. I don't remember the car we rented. I do however remember the drive to Palo Alto, highway lanes crowded with 5 p.m. traffic moving purposefully like so many industrious bees, in and out of lanes, swiftly circumnavigating the bay, heading south, south, into the city suburbs.

As we turned east toward Palo Alto, the commuters' sense of urgency gave way to tree-lined streets and bungalows with practical but well-landscaped yards. I'd first read about the digital Mecca in WIRED magazine in the late 90s, and then, as one of Douglas Coupland's wanna be Microserfs and an intellectually-endowed teen living in a rural Southern community, had daydreamed about as a place where the local chamber of commerce must have erected signs saying, "Welcome to Palo Alto! Nerds are safe here."

I'd imagined more habitrails and Legos, more glass and steel. And grass... I'd imagined grass. But in the autumn light of late September, the California landscape appeared a golden brown of scrub brush, cedar, and palms. Stanford's cardinal red banner stretched across the main entryway to campus, and I, aged 31 with an undergrad degree in journalism from Chapel Hill and a master's nearly complete, thought one thing only — I don't belong here.

My attendance at Medicine 2.0 was made possible only by scholarship, my application a result of happenchance and blind ambition. Late to the social media party, I had only recently signed on to Twitter, my moniker, AfternoonNapper, coming as an extension of my blog's title: The Afternoon Nap Society. Despite its name, TANS was less about napping and more about the reasons I was compelled to nap — surviving triple bypass surgery, a stroke, bypass failure, the loss of my left kidney, four brain aneurysms, and a gastric rupture. On Twitter, I was able to indulge my need for knowledge by following the nation's top medical institutions. Stanford was one of them.

When the call for scholarship applicants came through, I tweeted back to conference organizer, Dr. Larry Chu, that I wished I could come but the travel would prove a financial hardship. Since having a stroke, I had been fortunate not to lose my job, but my absence partnered with general economic downturns led to my position being restructured within the company such that I became only a part-time employee. Dr. Chu responded to my tweet simply yet enthusiastically, "You should apply!"

Should is a word with many implications. It is advice; it is a mandate; it is a theory. However, it does not suggest the outcome of what will happen when whatever should happen actually does. Once in Palo Alto, I sequestered myself. I knew no one, and thus was on guard lest anyone try to get to know me. The first morning of the conference, I stubbornly refused to ride the conference shuttle from the hotel to the Li Ka Shing Learning and Knowledge Center next to the Stanford Medical School. Instead, I took a bus. I arrived in time for breakfast, which I ate alone standing in the cool sunshine on the Li Ka Shing center's balcony while all the other conference attendees mingled and met. They were fit and tan, California cool, carrying iPads and iPhones and iPods, and I did not belong there.

But Dr. Abraham Verghese was a keynote speaker. I'd brought my copy of his narrative medicine novel "Cutting for Stone" along with me in the hopes that I would have the opportunity to get his autograph. It was a surprise to make my way into the plenary hall and find that the ePatient scholarship recipients not only were seated together but seated in front — in the very front — of the room, and gift bags had been placed on each chair. Inside was an autographed copy of "Cutting for Stone." Senior Associate Chair for the Theory and Practice of Medicine at Stanford, Dr. Verghese spoke of the ritual of the patient exam. As he described his slow and gentle movements from the pulse point on a patient's wrist to the tender fold inside the elbow, I felt a warm wave of recognition and took no more than a moment to realize why. The subtle techniques Dr. Verghese described were the same that my vascular surgeon, one of the top in the nation, had used upon my initial visit six years prior. My heart could not have been more full of admiration, so much so that as others applauded the close of Dr. Verghese's speech, I seized my personal copy of "Cutting for Stone" and made a beeline for the far side of the stage. Dr. Chu and Dr. Verghese stood together talking as the audience dispersed for a coffee break, and I stood three feet in front of the two doctors, clutching the novel with both hands at waist level, smiling, and vibrating with nerves, which was when Dr. Chu introduced me to Dr. Verghese by name. I didn't know Dr. Chu even knew my name. He had no reason to know my name — first and last, said with a welcoming arm extended. I hope that I presented myself with a certain sense of decorum; however, I fear that instead I gushed. After I thanked Dr. Verghese for signing — and personalizing — my book, I all but skipped back to my seat.

I bore similar enthusiasm for Associate Director of Digital Strategy for the Pew Internet & American Life Project, Susannah Fox. The work she presented included a specific focus on the role that social media played in connecting members of the rare disease community. After 31 years without a name for my collective ailments, I had just that August received the diagnosis of intimal fibromuscular dysplasia, a rare version of a rare disease. I'd met my first other FMD patient on the Mayo Clinic's social network, so Fox's research was electrifying — not only was I not alone, I was on to something in my quest to connect with other patients online. Again lacking any proper sense of restraint, I headed straight for Fox after her speech, failed to introduce myself, and immediately began talking. I like to play with placing emphasis on the different words in the short question Fox must surely have been thinking to herself. Some versions are more flattering than others.

"WHO is this woman?"
"Who IS this woman?"
"Who is THIS woman?"
"Who is this WOMAN?"

Fox, who seemed a good foot taller than I, reached down to examine the badge bearing my name and Twitter handle that hung from around my neck, suddenly took a step back, opened her eyes wide, and cocked her head, her long Honey Nut Cheerio-colored hair falling over her left shoulder.

"YOU'RE AfternoonNapper!" she said.

I blinked — a lot.

"Um, yeah," I replied, eloquent as ever.

"Oh my gosh; I've been reading all your tweets," Fox said.

I remember absolutely nothing of what happened next. Susannah Fox, former online editor of U.S. News and World Report, current Pew Internet researcher, was excited to meet ME.

These interactions were formative experiences, ones to which I directly attribute my development as an advocate. I had been an ePatient for years without knowing it — I don't remember not being empowered, engaged, and online researching my own health. However, it had never occurred to me that anything about what I did was somehow special, my viewpoints unique, my knowledge valuable. I was, and always had been, just me. The advocate in me apparently needed a little encouragement, and while I always do, I am fortunate to find myself in the position of now being able to be one of the ones doing the encouraging.

As my flight prepares for landing in San Francisco, I am eager to meet the new class of ePatient scholars at Medicine X — a conference of Dr. Chu's own creation, "an academic conference designed for everyone," that is now in its second year. I am fortunate to be a part of the MedX ePatient Advisory Board, which helps oversee the scholarship program that enables patients like me to attend. What patients stand to gain from participating in conferences like MedX is perhaps exactly what keeps more in the industry from including them — their voice, their confidence, their empowerment to push for patient-centered and patient-designed changes in healthcare. We belong here.

Learn more about and apply for MedicineX's 2014 ePatient Scholarship Program at http://stanford.io/1eAwQOD.

19 August 2013

A Circle, A Stroke

Dusk had fallen as I nosed my car up to the locked gates of the small elementary school on the north side of town. I turned off the ignition, removed the keys, opened the car door, stepped out onto the pavement, rounded the back corner of the car, and waited for my husband to pop the hatch. He reached inside, both hands gripping aluminum and rubber, and pulled out my new lime green and toothpaste white bicycle.

"I am 33. I am 33. I am 33," I chanted beside him. It was as much to myself as to any passerby. Standing only five-feet-tall and dressed in pink shorts and a purple shirt, I looked the daughter to my husband's six-feet-tall-and-bearded father.

"You got it?" he asked, one hand on the bike as the other reached up to close the hatch.

"Yeah," I said, rolling the bike along with me toward a small footpath alongside the gated school driveway.

The empty school parking lot had been my idea. It was Sunday and school was not yet back in session, so the parking lot satisfied my two requirements—there would be no audience, and there would be room to careen haphazardly without hitting anything of worth. My knees, palms, and head were another matter altogether.

It had been at least 15 years since I'd last been on a bike. As a child living in the mountains, I was at a loss for flat places to learn to ride, and thus didn't until age 12 when, after my grandmother's funeral, I found an old bike in her basement. In the Jones' Fish Camp parking lot, my father ran along beside me, holding on to the back of the bike's seat, as is apparently the only way in history man has ever devised to teach a kid how to ride. I suppose it's marginally better than the float or die method of teaching swimming.

That summer my father gave me a bike for my birthday. The bike was emerald green with knobby tires and 18 gears for climbing hills. I didn't like hills. Going up one was hard, but worse yet was rolling down one backwards, as I constantly feared would be my end. I didn't like going down hills forward either, which I blamed on my sixth-grade teacher. Her son was riding his bike too fast when he hit loose gravel. He and the bike slid out of control across the pavement, tiny rocks carving into his skin. He was hospitalized and for days on end subjected to hot tub soaks to soften his skin that was then scrubbed with a wire brush to expose and expel the grit and debris. His screams echoed throughout the hospital.

At least that's how I remembered the story, so I rode slow. I was a mountain biker burdened with a creative and vivid mind bent on imagining my severe injury at every corner and creek crossing. Though I disliked hills, I very much liked riding down trails so rocky that no earth showed through and my mind maintained such a narrow focus on picking the path of least resistance that there was no room for fear.

Thankfully my accidents were few. There was a run in with a sawbriar that ripped a now tiny scar into my left thumb. There was a drop-off that well bled my right knee. I nearly passed out once and did pass out on a ride up an old gravel road, which scared my dad, but the doctor ruled that I'd simply not had enough time to digest my morning pancakes.

I didn't take my bike to college. I wasn't comfortable riding around so many people and in such tight quarters. The majority of other students seemed to agree, and historic brick sidewalks took care of the rest. By then Dad's knees weren't what they used to be, and our bike riding just stopped.

When I had a stroke at age 28, bike riding was the last thing on my mind. I wasn't sure that I would be able to walk again unaided, much less command any sort of transportation. It took six months for me to get back to driving, and then I only allowed myself to go out during day-light hours on familiar roads at low speeds and with a chaperone. It was a tremendous victory when I had built up enough confidence to go the 1.8 miles to the grocery store alone.

Five years later, there are hardly any outward effects of my stroke. Those who know what Horner's Syndrome is—the drooping of an upper eyelid caused by a stroke's damage to the sympathetic nerve system—can spot it once I mention my history or I'm exhausted. However, the residual loss of pain and temperature on my right side isn't visible, nor is the fact that I can not walk with one foot directly in front of the other, as I need a wider base to maintain my balance.

Balance has been my greatest hindrance to re-establishing a "normal" life post-stroke. One really never realizes how often he or she stands on one leg, reaches for something far away, takes the stairs without using the railing, or walks somewhere carrying a cup of coffee until one is unable to do so. The ability to perform these extraordinarily simple tasks took years to get back. Along the way, I was accused of being drunk or high and given dirty looks for making use of handicap accessible facilities because the public didn't perceive me as someone who could be a stroke survivor.

Any stranger looking on as I stepped astride my shiny new green and white bicycle in that elementary school parking lot wouldn't have seen a stroke survivor either. Any stranger would have seen a hand grab tight on my arm as my first attempt to get both feet on the pedals left me hopping and falling over. Any stranger would have heard my husband's flip-flops scuff to an abrupt stop as on my second attempt I pushed off, turned the wheel too hard to the right, screamed wild-eyed with indefatigable grit, and hauled off for the far end of the parking lot laughing. Any stranger would have seen me gently squeeze the hand brake, lean into the curve, and ride wide circles around my husband as he called out, "You look good!"

Any stranger would have perceived the nothing out of the ordinary, the everyday; yet sometimes I feel that the stranger is me, as I push to discover who I am now instead of dwell on who I used to be.

10 June 2013

Dr. Mike Sevilla Has Left The Virtual Building

Hearing of Dr. Mike Sevilla's decision to leave the realm of healthcare and social media was like stumbling across the obituary notice of a mentor's passing.

Sevilla was one of the first physicians I met online to take notice of my own work, and he joined Dr. Michael Ulrich of Mayo Clinic to be the first physicians to participate in a live Facebook dialogue with the patient-run, peer-to-peer support group for those affected by fibromuscular dysplasia, FMD Chat, on Nov. 12, 2011.

But by 2011, healthcare social media was an old hat for Sevilla. In 2006, he was one of the first physicians to engage in social media, blogging as Dr. Anonymous at a time when most of us were still experimenting with ICQ messaging, Napster, and MySpace. Colleagues appreciated his voice as he blogged about what interested him and what he felt was important, and thus he garnered a following and a community. Affectionally referred to as "Blog-A-Holics Anonymous," the community supported one another.

"All of us would write a blog post, and we would post it up somewhere on a friends blog, and we would all go there and gather and leave comments and get to know each other," Sevilla said in his farewell address. "That was the old days back then."

He and his fellow pioneers of healthcare and social media operated without a guidebook. They found their own way and sometimes made mistakes, but the goal was to have a dialogue and to learn from one another. Now, Sevilla said, the community has become polarized, pointing fingers to say what "should" be done, which has lead to his growing sense of frustration.

"Where is the community out there? It's like 'you're on my team or you're not, you're with me or against me'," Sevilla said.

Indeed, as social media gained traction in the general population and within healthcare, the market became more crowded as users flocked to platforms such as Yahoo groups, Facebook, Blogger, and Twitter.

"The best and worst thing happened in healthcare and social media—more people started using it," he said.

As the voices grew more numerous, the vitriol grew more prolific.

"One of the things that I've observed in the recent past, especially out there on Twitter—I know it's been happening, you know, forever—I've seen out there more that people are just yelling," Sevilla said.

Sevilla hits on a cultural shift that has far greater implications than simply within social media. Media consumers overall have been fed and themselves fed the rise of the talking heads as civil discourse has been traded for histrionics and insults. Though I blame the advent of shock jocks and tabloid talk shows for pushing the boundaries of free speech toward our decline in civility—Howard Stern and Jerry Springer, anyone?—the increase in channels of dialogue and speed with which information is disseminated certainly made it easier to reach out and be a jerk to somebody. Communally we asserted our right to freedom of expression at the cost of the Golden Rule—do unto others as one would have them do unto you.

Thus, it should not be no surprise that I learned of Sevilla's decision to leave social media behind on Twitter from three physicians I follow who were discussing Sevilla's announcement, made via his podcast two days prior. Two of the physicians—a gastroenterologist from Texas and a family medicine resident from Washington—lamented Sevilla's departure while acknowledging his reasons for doing so, though the third, an ear, nose and throat doctor from Oregon, took issue with Sevilla's having made his decision so public. However, a public announcement is only fitting for someone who made so much of his life public and thus was left feeling overly vulnerable.

"Being this exposed and this transparent—people know who are out there—it really kind of wears you out," Sevilla said.

Sevilla is right. The public eye exists for scrutiny. We've love a good scandal and will make much ado about nothing if necessary. Even those with nothing to hide grow weary of continually making sure they've nothing to hide, or the emotional turmoil of laying oneself out on the line simply becomes no longer worth the reward. As Sevilla unplugs and walks away, so too does another social media public figure, Secret Agent L, whose notoriety exploded after a local news interview gave way to a 2010 CNN feature that exponentially increased the Secret Agent's followers and missions of kindness but ultimately tapped out a giving heart. Similarly, The Bloggess wrote a book that catapulted her to the top of the New York Times' best seller list and yet she still struggles with depression and anxiety and chooses to live in rural Texas. Then there's Allie Brosh whose blogging rose to fame in stride with her depression, and well, the list goes on. Meanwhile, I'm trying to balance being AfternoonNapper with being a rare disease community leader with being a magazine editor with being just plain old regular me, and plain old regular me has to be occasionally chewed out by her best friend and her husband to "put. the. smartphone. down." and pay attention to the flesh-and-blood human beings directly in front of her, or hell, just go out and garden rather than read another damn status update.

So when Sevilla said, "I've always told myself that if it stopped being fun, that then I would stop, and it's been harder and harder to find fun in social media for a while, and it's really felt like it's been a job," I understood exactly what he meant. To distinguish oneself requires hours of hard work and continual effort—building skill sets, networking, keeping up with current trends, and juggling personalities (one's own and those in one's communities). And as our social media capacity builds, the burden on the social media generators increases.

"To be considered cutting edge these days you have to do things like have a book deal, or do a TED talk, or have a smartphone app," Sevilla said. "I don't have any of those. I don't have a desire to have any of those, and I don't have the time, the mental strength, or the will to do any of those."

Admittedly, I want the book deal, but I wanted that long before I ever started being social about my media. The rest? Well, to achieve it would take a lot of work, and frankly, my own time to step out of the social media spotlight may come long before there's an app or a $10,000 TED ticket with my name on it. However, I continue to be willing to give myself to this job I appointed myself to do because I continue to believe that it's important. Sevilla said that when he began using social media he gained a following because he was a novelty—a physician using social media—but that that space has become a crowded one. Again, he's right; however, just because there are more physicians using social media doesn't mean that there are better physicians using social media or that all physicians are using social media. My own physicians are not using social media. I'm dragging them along kicking and screaming, showing my GP how my smartphone allows me to input and graph my blood pressure readings, and giving my rheumatologist my log in information for 23andme so he can click through my personal genome results. And still I caution every well-educated, urban techie who flippantly touts smartphone and high-tech solutions to healthcare problems that access is still a very real issue in the rural market, compounded by health literacy limitations that know no geographic or socioeconomic bounds.

From my patient-perspective, Sevilla leaving healthcare social media behind doesn't clear space for new users, it creates a void in our leadership. Too many physicians buck the social media trend while complaining about what patients are consuming online—Sevilla created content, the ultimate panacea for an ill-informed consumer. It is my hope that each and every social media user evaluate his or her own voice's volume and tone, then focus on the goal of fostering a dialogue that grows the next generation of social media users to be better than we are, to be more civil, to be more informed, to be more giving, and, above all else, to keep being social from becoming more important than human beings.

09 June 2013

Charydbis Paints, A Story About Regina Holliday

Her passion is a maelstrom, pulling the masses into her swirling sea of brushes and paint, Legos and cinderblocks, yet as does Charydbis, Greek's mythological representation of the tides, all who are drawn in by this great passion are returned—churned over, tumbled round, and changed.

Her intensity frightened me at first. There are few in this world who live with such a sense of purpose and clear sense of leadership, and too often those who do separate themselves from the sense humanity that drove them to their cause. What endeared Regina Holliday to me consequently was the way her voice strained and rose an octave as she told the story of her late-husband's diagnosis with kidney cancer. It was a voice rife with emotion yet sharpened on anger and urgency. It was a voice that had experienced loss as the result of wicked biology and hurt as the result of medical arrogance and incompetency. It was a voice I recognized.

Holliday fed her experiences into her art, becoming an advocate whose paintings remind me of Van Gogh—at once fervent, piercing, melancholy, and emboldened. It's a likening about which I have commented to her before and which she drew upon when painting my story upon the back of a suit jacket for The Walking Gallery, an advocacy movement she leads as a way to bring personal stories back into healthcare. Of the more than 250 jackets now in the Gallery around the world, my jacket is number 126.

In addition to her walking works, Holliday paints on site, turning conference presentations and panel discussions into lasting metaphors. She packs a suitcase full of acrylic paints, canvases, a small palette, easel, and painter's apron, and busily translates words into images, stopping occasionally to chat with the curious onlooker unfamiliar with her work, hug a Walking Gallery member, or give yet another writer yet another interview. She's constantly on the go such that just reading her schedule makes me tired, yet she is as relentlessly as dedicated as a mother to her two young sons who already display her keen sense of wit and wisdom.

Holliday and I were at the MedCity News ENGAGE conference in Washington, D.C. when she asked if I would be her easel while she took the stage to present her latest piece, completed on site during the day-and-a-half conference. She said it was easier to explain a painting when someone else was holding it. I took the invitation at face value, honored to have the opportunity to share even the fringe of a spotlight with her. I held the painting by its wooden slat across the middle of the back. "It's very shield-like," I said.

We climbed the three small stairs to the stage and stood in a line—me, the painting, and Holliday at the podium. Her words came quickly. Neither of us were supposed to be there, she said—I having first criticized MedCity News for having no patients on the list of speakers at its first ever patient engagement conference and she having been told that she was not allowed to paint on site. However, both of us were there because our mettle met with equal moxie, as MedCity News Editor-In-Chief Veronica Combs cleared the way, enlisting me as a panelist as Holliday as painter.

Standing so close to something so fierce, I clung to my painted shield, captivated by her face. She grasped the podium's edge with her right hand, leaning toward the microphone, as her left hand curled into a loose fist, thumb turned up and just slightly separated from the rest of her fingers. And ever so slightly, that hand trembled. As she described the painting's imagery, a tornadic funnel of change with the color of a bruise, tears welled in her eyes, and as she dedicated the painting to Combs, who during a panel discussion disclosed her own miscarriage six years prior, one slick, shiny drop crested her cheek and ran down to her chin.

Past the glare of the spotlight, I saw Combs walking up the center aisle. She was crying. She and Holliday embraced. "Thank you," she said. And then she took me too into her arms. "We'll have more patients here next year I promise," she said.

Such is the way things are changed, turned around, tumbled over, and through the havoc of the heart, disrupted.

22 May 2013

Patient Engagement: Are Apps Good Engagement Tools?

This week MedCity News shared an article about patient engagement that posits, "Patients today aren’t truly engaged with health technology or even with their own health." The article, written by Laura Wagner and originally appearing in VentureBeat, is a commentary based on a session from HealthBeat 2013, a VentureBeat presented conference.

VentureBeat "covers disruptive technology and explains why it matters in our lives," which well explains the session's title: “Consumer Health Apps: Human Centered Design." However, if the panel's conclusion was that patients are not engaged with health IT or their own health, then the human centered design part of consumer health apps is clearly failing—because the apps are not designed to meet consumer needs. No one needs an app.

In order to even want an app, a patient—engaged or otherwise—must first have a device. Far too many advocates on the health IT bandwagon assert that smartphones are ubiquitous. According to Pew Internet statistics, 85 percent of U.S. adults have a cell phone. Of that 85 percent, 53 percent have a smartphone. Of the 53 percent who have a smartphone, 52 percent have used that smartphone to collect health information, Pew Internet reports. The additional questions to ask are—of that half of a half, how many are using an app and how many remain patients of Dr. Google? One report from Adeven, a mobile analytics firm, provides some insight—nearly 400,000 apps sit in the iOS App Store classified as "zombies," generating few downloads and little to no revenue for their producers. 

The beauty of the internet's search function is the power of suggestion. One doesn't need to know exactly what one is looking for in order to embark on a search. With each return of results comes an addition of knowledge that enables one to further refine one's search and/or run off down an entirely different rabbit hole of information. Apps limit this kind of unfettered exploration. Their specificity of operation—the very thing that makes them a marketable app—is exactly what keeps them from being the go-to tool for inquiring minds. To want to use an app is to want to do a specific thing. To engage patients in this form of health IT we must not ask how we get patients to use an app, but how we get patients to want to do the certain thing in question. 

Whether we want patients to keep track of their blood pressure, count calories, log blood glucose readings, or learn about cellular reproduction, we must first find their source of motivation. Games and rewards only go so far in triggering prolonged motivation—but show me the game that rewards me not with new flowers for my virtual garden or a special frog to breed and instead with reduced insurance premiums and I'll make it part of my daily routine. What patients want is to define their own goals and outcomes. To be "healthy" is couched in institutional ideology of standards and measurements; yet a patient who couldn't care less about his BMI and blood pressure may care enormously about living long enough to walk his daughter down the aisle or celebrate his 50th wedding anniversary. To engage a patient in his own health one must find what matters to that individual patient. 

To engage a patient in health IT is thus a secondary matter, and engaging patients in mobile health IT a tertiary one. The benefit of utilizing health IT to achieve the patient's self-defined goals and outcomes must be clearly defined with a detailed measure of cause and effect. Should the aforementioned patient who wishes to walk his daughter down the aisle receive a doctor's recommendation to lose 10 percent of his body weight, the benefits of doing so must be illustrated in relation to his goal. According to a recent New York Times article, a recent national study found that "patients who lost a mere 7 percent of their total body weight reduced their risk for diabetes by 58 percent." For the patient to gain his own definition of meaningful use out of any health IT, the data input must provide data output that illustrates what successful weigh lost accomplishes in relation to his goal—the real impact on his disease risk, how much easier it is for his heart to pump, the decreased burden on his knees. Such feedback ties directly in with health literacy, as in order to engage in one's health one must understand the why before even getting to the how.

Join in the discussion about patient engagement at MedCity News' ENGAGE conference, held June 5-6 in Washington, D.C., where I'll be on a panel talking about what patients do and do not want from those seeking to engage us. 

11 May 2013

National Orange Popsicle Week Comes to Knoxville to Raise Stroke Awareness

Learn more about stroke from staff at University of Tennessee Medical Center and join in recognizing National Orange Popsicle Week from noon to 7 p.m. May 19 at Pop Culture, Knoxville’s gourmet popsicle shop.

“I love the simple and straightforward idea of taking something I love doing and being a part of—making popsicles—and using it as a basis for education,” said Jason Mitchell, Pop Culture’s owner. “It’s so much easier to learn and be receptive to awareness when you hare having fun.”

National Orange Popsicle Week (NOPW) began as a way for a young woman who suffered a major brain stem stroke at age 24 to raise awareness of stroke in young people. One in five strokes occurs in adults age 22 to 55. Stroke is the fourth leading cause of death in America and a leading cause of adult disability, according to the National Stroke Association.

UT Medical Center, which the American Heart Association has recognized for improving stroke care by promoting consistent adherence to the latest scientific treatment guidelines, will be providing free blood pressure screenings and stroke education during the popsicle-based awareness event.

A stroke occurs when there is an interruption in blood flow from the heart to the brain, causing brain cells to die. The May 19 popsicle event at Pop Culture will raise funds to purchase iPads for the UT Stroke Center’s use in aphasia treatment. Aphasia is a disorder caused by damage to the parts of the brain that control language. Aphasia can result in difficulties reading, writing and speaking.

“Stroke is a devastating disease: it happens like a tornado and the lives of the survivor and their families are never the same,” said Jennifer Henry, BSN, RN, CNRN, director of the UT Stroke Center. “Many people mistakenly believe that stroke only happens when people are older, when in fact, stroke can happen at any age. It's critically important that people take a look at their own risk factors and take steps to reduce risk. Everyone, even children, can learn to recognize the warning signs of stroke and the importance of calling 911 when stroke symptoms happen. NOPW shares this message in a unique way.”

Amy Wooddell’s first symptoms were dizziness and nausea, which didn’t neatly fit the acronym FAST, which is used to recognize and act on stroke symptoms—Face: does one side of the person’s face droop? Arms: if the person raises both arms, does one arm drift downward? Speech: does the person’s speech seem slurred or strange? Time: if any of these symptoms are observed, call 9-1-1 immediately.

Wooddell went to the emergency room only to be given medication for vertigo and sent home. The next morning she felt worse. The cause was a dissected vertebral artery, one of the major arteries leading to the brain. Doctors were unable to treat the dissection, and Wooddell later that night suffered a brain hemorrhage and lapsed into a coma. When she woke up days later, she was paralyzed and unable to speak.

Wooddell’s recovery was arduous, including 30 days in the intensive care unit. As she became more vocal, she finally was able to tell her new husband that she loved him—and that she wanted an orange popsicle.

However, Wooddell wasn’t allowed solid foods—even a popsicle—until she passed a swallowing capability test while in an inpatient rehab unit. The day she did was a victory, and her rehab caseworker bought an entire box of orange popsicles for Wooddell and her family. The orange popsicle was a much craved delight after nothing but water and liquid nutrition and became a symbol of recovery.

Fellow young stroke survivor, Sarah E. Kucharski learned about National Orange Popsicle Week through social media. The mission and the method resonated with her. Like Wooddell, Kucharski had a stroke at age 27 that was first diagnosed as vertigo, despite having a complicated vascular history. She spent a week in the hospital with extreme dizziness, double vision, and the inability to walk unaided. Nonetheless she was told that her symptoms would go away as quickly as they had developed and sent home with a walker.

It wasn’t until the first night out of the hospital that Kucharski’s discovered that she had no temperature or pain sensation on the right side of her body. She consulted with her primary care doctor who referred her to a neurologist who immediately said that, given her symptoms and Horner’s syndrome causing her left eye to droop, her case was “a text book” stroke scenario.

Kucharski’s recovery was self-driven, and it took another four years for her to finally receive the diagnosis of fibromuscular dysplasia (FMD), a rare vascular disease that can cause narrowing of the arteries, arterial dissection, aneurysm, and stroke. Kucharski has a rare version of the rare disease, which has no cure, and no real treatment other than management of symptoms and surgical repair of the effected arteries. She has used her own experiences as motivation to found an international nonprofit organization dedicated to those affected by fibromuscular dysplasia—FMD Chat.

While Kucharski and Wooddell share similar stroke stories—and a love of popsicles—they don’t share geography. Wooddell lives in Kansas, and Kucharski lives in Western North Carolina. NOPW may be rooted in Kansas, but strokes strike all around the world, so once Kucharski learned of NOPW, she wanted to get involved.

As managing editor of magazine dedicated to the Southern Appalachian region, Smoky Mountain Living, Kucharski got to know Knoxville through her work travels. She had read about Pop Culture and visited the mobile popsicle vendor’s bricks-and-mortar shop on Walnut Street last year. With the goal of bringing NOPW to the region, she reached out to Pop Culture’s owner.

“You should check out this event. If there’s anyone who could make it happen in Knoxville, it’s you,” she wrote to Mitchell on the Pop Culture Facebook page.

Mitchell’s response was enthusiastic. He immediately offered up the Pop Culture shop where he makes and sells his famous popsicles using ingredients from local vendors, milk without rBGH growth hormones, and sweeteners such as organic cane sugar, honey, or agave. He’s even put extra effort into making the color orange.

“It took me months to find something natural, and a company out of Louisville, Ky. formulated some orange coloring out of Beta-Carotene for me to use, and it's odorless and tasteless,” Mitchell said.

For NOPW, Mitchell will be serving up his Orange Cream and Mango popsicles, but he isn’t afraid to get creative.

“I may make something else that is orange, but I have to play around a bit with the ingredients and their respective colors to see if something else ‘Orange’ is possible,” Mitchell said. “The bright red of Strawberry Lemonade or the robust purple of Blueberry Vanilla would be immune to adding natural orange color.”

Pop Culture is located at 706 Walnut Street next to the Knox County Public Library, Connect via Facebook at facebook.com/popcultureknox. To learn more about National Orange Popsicle Week, visit nopw.org or facebook.com/nationaorangepopsicleweek.

08 April 2013

Whichever Way You Swallow It - A New Medication Adherence Method

I bought a pill box.

It is a box — for pills.

It is not small, or trendy, or cute, or ironic. It's not some repurposed cigarette case in which I keep Midol and Band Aids. It's a giant, plastic, albiet somewhat colorful, rectangle. Forget pocket-sized. This is a portfolio of pills, a veritable Advent calendar of pharmacology.

Each morning, I snap open a color-coded translucent lid marked with a time and respective day of the week and turn the entire ratting contraption over to dole out a pre-selected handful of medicine. The morning brings lots of colorful ovals—purple, green and blue, white, among others. In the evening I repeat the process, distributing pink, beige, and aquamarine. Saturday brings the cobalt blue sheen of Vitamin D. Snap, shake, pop, swallow. In only a matter of days, my medication process has become a thoughtless process of repeated motions, and I think I like it that way.

I've resisted buying a bill pox for years. "They're for old people," I said. "They won't hold all my medications," I said. "I'll just have to refill it every week," I said. I spent hours — yes, HOURS — shopping online for the perfect bill box. I wanted something that didn't scream "geriatric." Many seemed too much like those automatic pet feeders with rotating lids such that only one dose at a time would be revealed. More sophisticated ones cost a small fortune and featured alarm bells for audible reminders. Quaint little pretty boxes in designer colors wouldn't hold a day's worth of pills, much less serve any truly useful purpose. No, the only option that featured compartments large enough to hold a daily vitamin and then some with enough capacity to store a week or more's pills were the dowdy plastic boxes with S M T W T F S in raised black lettering across the day's lids.

I refused to go there.

"I can remember to take my medications," I said. "I know what day it is," I said. "I never get yesterday mixed up with today," I said.

And as luck would have it, my health improved, or at least the pharmacological treatments for my conditions lessened. "Two pills. I can take two pills," I said. "I'll even add some supplements for good measure," I said. So I did. Sort of. A daily vitamin was easy enough. Pro-active, I tried the Vitamin E, the Flax Seed Oil, the Red Rice Yeast... there was aspirin that came and went. I never knew exactly how to answer the nurses as they updated my medications list. "Yes, no, maybe, sometimes," I said.

After enough time, the medications list began to grow again. When I packed for an overnight trip, my duffle bag doubled as an unwieldy maraca. Bottles of pills inevitably worked their way below the shirts and underwear to hide. In September, while souvenir shopping in San Francisco's Chinatown, I relented that perhaps a small bag would be useful in corralling my mobile medicine cabinet and purchase one in purple brocade.

The bag was charming enough. In addition to my pills, it could hold a toothbrush, travel-sized toothpaste, digital thermometer, and a few bags of tea. I was pleased. However by late winter, the little purple bag was a struggle to zip. There were the rounds of antibiotics for the bout of pneumonia and cough medicines to suit. A new diagnosis meant the addition of new tools with their own carrying case. Additional lab tests meant an old med once discontinued came back into the mix, and finally so did another old med. The bare minimum of what I was to take no longer fit in my pretty purple bag, much less the "just in case" drugs I carried, well, just in case.

So while standing in line at the drug store, the giant, plastic, albiet somewhat colorful, rectangle pill box caught my eye. It was on sale, and I was tired. I'd noticed that over the past few weeks it had become considerably more difficult to remember exactly what I had taken and when. Furthermore, managing side effects and possible interactions was trickier. I feared missing a dose less than the possibility of doubling a dose, which was a distinct concern given that my methodology of remembering what a pill looked like in my hand before I took it seemed not to be quite as accurate as it once had been before.

The giant, plastic, albiet somewhat colorful, rectangle box wasn't perfect. Technically it was designed for a patient taking medications four times a day; however, it was somewhat divided in the middle such that I could easily make the top half — morning and mid-morning — into a week's worth of day and night and the bottom half — afternoon and evening — into another week's worth of day and night. I wouldn't have to worry about reloading for two whole weeks, a factor that greatly appealed to the scatterbrain in me. The downside was that at any given time, I could be carrying around two whole weeks of pills with me, which would still be less than my habit of carrying entire bottles of pills, the loss of which would amount to well over $100 in co-pays much less the hassle of having refills authorized. With two weeks of pills on hand, I could reasonably leave the pill bottles of medication at home; however, without the pill bottles, no one would have access to the names and dosages of my medications in the event of an emergency.

Upon unwrapping the giant, plastic, albiet somewhat colorful, rectangle pill box at home, I found that the designers of it had considered of this identification problem. Included was a self-stick label to be filled in with just the sort of information as one would find on a pill bottle, which while woefully inadequate, was at least a step in the right direction.

And I too am headed in the right direction, as what I have labeled a personal defeat — buying a pill box — has, in fact, improved my medication adherence. When I failed to take my medication properly, it wasn't because I didn't want to take it properly, it was because I was too arrogant to admit that I might need help doing so. Such is a continually critical battle in being a patient — learning when to make use of the resources available rather than sticking out the old way of doing things simply out of resistance to change. Illness changes us whether we are accepting of it or not. It is up to us to face change in a manner such that it may be incorporated into our lives with the least amount of disturbance to the things that we want to actually want to do. Rather than spend five to ten minutes every morning and evening peering at pill bottle labels trying to remember what I have and haven't taken, I now only have to spend five to ten seconds swallowing my pride.

01 April 2013

What's The Point in Telling Stories?

Penny's eyes are disconcertingly blue. They're the kind of blue only seen in carnival glass. Penny looks directly at me when she speaks, her eyes ever so slightly wider and eyebrows just barely raised such that I know that her interest is honest. She's not much of one for fussy things, never pulling back her long blond hair that falls in casually disheveled waves just beyond her shoulders. She enjoys golf, and though I loathe the game I imagine it suiting both her frame and her style of competition—minor adjustments made to suit varying circumstances and always played with the goal of personal bests in mind.

Thomas is lean, wears slack with plaid shirts—cotton or flannel depending upon the season—and sometimes allows his mostly brown, but somewhat salt and pepper beard to get ahead of him, its growth seemingly less purposeful than opportunistic. He drives a reasonably-sized pick-up truck. His greetings are an equal mix of eagerness and caution, as he peers over the top of his gold-rimmed glasses like an inquisitive barn owl. He always carries a computer, which he grips too tightly in his right hand such that the screen splinters outwards from the impression of his thumb. He's planning a trip out to Yosemite with his college-sophomore-aged son this summer. He hugs me whenever we say goodbye.

Matthew is reserved. He crosses his long legs at the knee and places one slender hand over the other as he listens. His slacks, dress shirt, and tie are impecable but, on the whole, unremarkable in shades of khaki, grey, black, white, and blue. His dark brown hair is combed back. He speaks softly yet unwaveringly. Even his laugh is measured. He has twin sons born in mid-September. We shake hands hello and goodbye.

Christopher is tall and lean with dashing brown hair and meticulously trimmed beard. His fashion also tends more on the dapper side with striped shirts and slacks. He is direct, if not perhaps a tad perfunctory, but appreciates a sense of humor, even a caustic one. He is married and seems to rely on deductive reasoning supported by data.

Elizabeth is social. Her slight Southern accent comes out less in the pronunciation of words than in the slow manner in which she speaks. It's as though she spends most of her time talking to very old people. She smiles a lot, and wears her brunette hair pulled back. She married her college sweetheart—they both went to Carolina—and the two of them moved back to her hometown to work with her father. She does not yet have children.

Penny, Thomas, Matthew, Christopher, and Elizabeth are all doctors. They are my doctors. They are also human beings with stories of their own. Stories may seem to do little in terms of patient care; however, sharing stories creates a bond and with that bond comes trust. With trust comes the ability to listen reciprocally. I am the better patient, and they the better doctors, for it.

26 March 2013

Dissing Ability

Whether in odds or evens, flights, or cases, stairs divide the cans from the can nots.

When I was discharged from the hospital, misdiagnosed then with vertigo and re-diagnosed later with a stroke, I was unsure how I was going to get inside my house. A steep flight of wooden stairs ran from the back door to the kitchen. It took two sidewalk steps and another four to get to the front door. Despite a week of resting recovery, I was unable to walk unaided. I was given a grey and chrome walker just like my great-grandmother had used, and bounced along the hospital halls like a sad little pinball. Per my request, a physical therapist—alarmingly old and tiny—hobbled me to the fire escape stairwell just outside my room and spent 20 minutes clutching to a safety band lashed around my waist as she explained "good legs go to heaven, bad legs go to he..." She didn't actually say "hell" but instead raised her eyebrows on the first syllable of the word and then went silent as she glanced downward and jutted out her chin. My good leg was to lead up the stairs; my bad leg was to lead down the stairs. The problem was that neither leg felt particularly more sure than the other. Having always been heavily right-foot dominate and my right side being the most effected, I was forced to begin adapting my left arm and leg for the tasks of day-to-day. 

It was bathing that first night at home that led to the severity of my impairment's discovery. My husband ran a bath for me, and holding his hands, I stepped with my right foot into the tub. "Oh, Travis. That's cold," I said disappointedly. He furrowed his brow. "No," he said. "No it's not." I lifted my left foot over and into the tub. Heat made my skin tingle. We lowered my body in to the water. I relaxed, laid back, gave way to the water's gravitational release. I was quiet. I swirled the water with my hands. On the left, I was pink and hot. On the right, there was nothing but a sensation of movement, the push and pull of tiny currents flowing against my skin. I soaked. Travis washed me and, as I stumbled out of the tub, wrapped me in a towel, drying me while I clung to the sink counter for stability. He guided me from the bathroom down the hall to the bedroom. Curious, we poked and pinched at my body. I asked him to hurt me, to pinch me like he meant it.

"I am," he said.


"I don't want to hurt you," he said.

"You're not."

It was the truth. From the neck down my right side bore no sensation of pain or temperature. We, though untrained in the astute art of medical observation, decided that the situation was "abnormal." I saw my primary care provider who, trained in the astute art of medical observation, concluded that my case was beyond his means and referred me to a neurologist. The neurologist nodded as he listened to my story, breaking a wooden swab in half to poke me with its splintered end. On the left, pain. On the right, nothing. He brandished a metal tuning fork. On the left, cold. On the right, nothing. Yet the gentle brush of the swab's cotton-tip registered.

I was fascinated and vindicated. During the week I had spent in the hospital—stored at the end of the pulmonary wing for unexplained reasons—the hospitalists never touched me. Their rounds meant five minutes or less of leaning on outdated hospital furniture, professing that I had vertigo, that it would go away as quickly as it had come on, and that my lack of sensation in my right hand was most likely due to the infected IV site for which I was allowed a topical antibiotic. After my initial admission there had been no more tests, no scans, no specialists. However, my symptoms and the ipsilateral Horner's syndrome affecting the left side of my face made me a textbook stroke case the neurologist said.

By then, there was little to be done. My husband had worked throughout my hospitalization, and once I was home there was no point in him hanging around to babysit me. I slept. I slept in our bed through the night, and was moved to the fouton during the day where I lay, most often naked and wrapped in a light blue comforter, for the rest of the day and listened to the TV. My double-vision made it difficult to watch any programs for more than a few minutes at a time, and even then, I had to shut one eye. Unable to do so much as pour a glass of water for myself, I typically didn't eat until my husband came home, at which point he would fix dinner, do housework, mind the pets, supervise my bathing if I was up to it, and then we'd go to bed. We lived this way for nearly six months.

Rebuilding was hell. I had never wanted to be a housewife. My loss of independence resulted in a loss of identity. Although I had been a patient many times before, I was always of relatively able body and mind. I cried because I couldn't leave the house on my own. I cried because the most simple tasks took so much effort. I cried because once finally able to cook again, my sense of taste was askew. I cried because I missed my real job.

And then, I stopped crying. It is only after suffering tremendous loss that we can see what we have truly gained. Without the burdens of a productive life, I was free to pursue what I wanted; moreover I was free to think about what I wanted and make those things a priority in my life.

I went back to work. I traveled to Puerto Rico and hiked in the rainforest (ok, so maybe it was more of a casual saunter than a hike). I went to graduate school. I became a teacher. I began writing more. I got a diagnosis. I became managing editor. I rode a mule at the Grand Canyon. I became the interviewee rather than the interviewer. I traveled to Paris. I founded a nonprofit. I lobbied on Capital Hill. I swam with stingrays.

It's now been nearly five years since the stroke. I'm still prone to wearing wicked blisters on my right foot. I've learned that hot doesn't feel hot as much as it feels electric and have adjusted my response accordingly. I still close my left eye when looking over my left shoulder in order to ease the nystagmus' jumpy effect. I don't do well in narrow situations — i.e. no cliffside precipices for me — and when I get tired the Horner's syndrome shows. And I still choose the elevator instead of the stairs.

Judge not by what you can only see, as what you see shows little to nothing of what actually has been accomplished.

13 February 2013

#HCSM Review—Health Affairs & Rare Disease Edition

This Feb. 13, 2013 edition focuses on the following themes: the Health Affairs Briefing Reminder: New Era Of Patient Engagement held on Feb. 6 in Washington, D.C. and subsequently released edition of Health Affairs — and — the upcoming Rare Disease Day: Disorders Without Borders to be held worldwide on Feb. 28. Included within these focus areas are topics such as health literacy, drug development, healthcare costs, patient-centered care, and deliberations on what makes one a patient.

Health Affairs is the New Shirtless Dancing Guy
Dawson attended the HA briefing in advance of the journal's February edition dedicated to all things ePatient. He calls attention to the fact that no "actual patients" were on the panel, while appreciating what HA has done with the issue. Listen in to audio from the HA briefing.

‘Patient Activation’: Real Paradigm Shift or Updated Jargon?
Jacob Molyneux
A nice summary of key issues from the HA briefing, which Molyneux, American Journal of Nursing senior editor, attended in D.C. Molyneux is spot on as he writes, "It’s unlikely we’d be talking so much about patient engagement if we weren’t facing, perhaps as never before, the need to do something about the glaring gap between costs and quality in the U.S. health care system."

American Institutes of Research
AIR authors contributed two articles to the HA edition. The first article compares data available with what patients are seeking. The second suggests a framework for increase patient engagement. The link in turn links to reprints of both articles in full.

Family Races Against the Clock for Treatment for Giant Axonal Neuropathy
Eileen O'Brien
Lori and Matt Sames are fighting for the life of their daughter, Hannah, who has the ultra rare disease, Giant Axonal Neuropathy (GAN). When Hannah was diagnosed in 2008 there was no GAN patient organization, so the family started Hannah’s Hope Fund and are about to start a gene therapy clinical trial.

App developer Ekins discusses his inspiration for Open Drug Discovery Teams (ODDT), which applies the concept of open sourcing to the collaborations of research and awareness for rare diseases. Yet within the technology is the humanity and curiosity that leads to innovation.  

Hopes and hurdles in the fight for Issac and his rare disease
Adriana Barton
Canadian press The Globe and Mail shares the story of a young patient diagnosed with MPS VI, an extremely rare metabolic disorder. The article explores the burden rare disease patients face without a large enough population of patients to submit to drug testing, as well as pharma's general reluctance to invest in drug development for small populations.

Employee Social Media Policies After NLRB Appointments Invalidated by Federal Court ... Everything You Know Is Wrong?
David Harlow
The National Labor Relations Board has issued a series of reports based on its decisions in cases regarding employer regulation of the use of social media by employees. Now that the validity of recess appointments to the NLRB has been upended by the DC Circuit Court of Appeals, these – and many other – NLRB rulings are technically invalid. Should health care employers therefore ignore the NLRB precedents on regulating social media? Harlow says no – the contours of the rulings should still be followed in sensible social media policies.

Who is the Healthcare Consumer?
Breaking down age brackets, Ziady explores connecting the brand with the consumer. "More and more, patients are shopping around for care, the same way they do for other consumer services. Patients are actively researching their clinical care alternatives to determine how and where they will spend their healthcare dollars."

Check out this preliminary version of the September 2012 health survey data from the Pew Research Center. A full report will be released later in the year.

10 February 2013

Paying Lipservice to Patient Engagement

Health Affairs held a briefing this week in Washington, D.C. focused on the content of the magazine's February 2013 edition, New Era of Patient Engagement. The briefing boasted a notable list of policy wonks as speakers including Howard Koh, Assistant Secretary for Health, US Department of Health and Human Services; David Colby, Vice President of Public Policy, Robert Wood Johnson Foundation; and Joe Selby, Executive Director, Patient-Centered Outcomes Research Institute. Yet no one on the panel bore the simple title of ePatient.

The event's twitter stream (tagged #HA_Patients) hit a few highlights, and a podcast was released after the briefing. These tech alternatives to actually reading the HA edition will have to suffice for most patients due to an all too common problem—journal access. In the medical and academic journal market, one must pay to read. An individual subscription to HA, delivered online, is $143 per year. A print subscription is $158, and the Premium subscription that includes online, print, and mobile versions comes in at $178. In comparison, the New England Journal of Medicine (NEJM) costs $169 each year for a print, online, and iPad subscription and $139 for the digital only edition. The American Medical Association's journal (JAMA) is $125 a year, online only, and $185 for print for those who are in an "other" profession such as being a patient. I can't help but think of these prices in relation to other bills. To subscribe to HA, NEJM, and JAMA—digital only—would cost $407 a year, which, given my insurance, would be the equivalent of 40 generic copays, 16 trips to the primary care doc, or 8 trips to the neurologist. For a patient to subscribe to the journals of record simply isn't practical.

So then how can patients be expected to participate in their own healthcare, to engage in improving the healthcare system as a whole, if the majority of the medical establishment continues to shut patients out of the dialogue? To my fellow patients I say, "They are talking about us, but they are not talking with us."

The Society for Participatory Medicine featured in 2011 an article on the Patient Activation Measure—a title that sounds suspiciously like a robot's start up sequence—which is a method for assessing how activated a patient is and how to use that information to improve outcomes. Developed by Dr. Judy Hibbard, who appeared on the HA briefing panel in Washington, PAM uses thirteen questions to ascertain the patient's engagement level such as "Taking an active role in my own health is the most important thing that affects my health," "I understand my health problems and what causes them," and "I am confident I can figure out solutions when new problems arise with my health." Patients are assigned an activation level of one through four. It's an interesting concept; however, there remains an element of what must be done TO patients rather than what can be done WITH patients.

Susan Dentzer, Editor-in-Chief of HA, opened the HA briefing with this statement: "Even though we're calling this the New Era of Patient Engagement, probably a better title would have been the New Era of Person Engagement because after all we all are people, we are either patients in the past, we have been patients, we are either patients now, or we will probably will be patients in the future, but we can certainly agree we are all people, so think of this also as the new era where we really try to get us as persons engaged in our healthcare."

I do not fully subscribe to the "we are all patients" mantra, yet I appreciate Dentzer's qualification that while patienthood may have not yet occurred, our personhood gives us a common bond. Patients are people. Providers are people. Even policy wonks are people. The problem is that being a person does not translate to being a patient the same way that being a patient translates to being a person. A person eats, sleeps, breathes. A patient has been on a liquid diet for days before surgery. A patient choses which position in which to sleep by that which causes the least pain. A patient measures lung capacity with a spirometer to ward off the onset of pneumonia brought on by bed rest and shallow breathing. A person who has battled at most a run-of-the-mill case of the flu, who has never had a bone broken, a wound stitched, an infection battled, an IV line blown, a catheter inserted—is not a patient. A person who has never spent more than an hour in thin and scratchy open-backed gown, has never had their urine and bowels examined and measured, has never awoken from anesthesia cold and shaky, has never cried in a parking lot due to relief or grief—is not a patient. A patient is a person, but a person is not a patient.

These people who claim ownership over the title of patient with the assumption that they will one day become a patient do not know what that experience will entail and do not want it. We patients do not wish it upon them. Being a patient is hard. Being a patient who survives is harder, and one who thrives, the hardest yet. Pretending to understand what it means to be a patient without ever having been a patient belittles the enormous struggle that patients undergo, and it is an inexcusable affront for the medical system's leaders to continue to engage in conversations about patients without including patients. 

If we are to foster patient engagement, we must break down the silos of care and bring representatives from all the concerned parties into the discussion in order to attain true communication. Because patients do not know what it means to be an emergency room doctor. Patients do not know what it means to be a primary care physician, or a hospital administrator, or a medical device maker. Key players such as these play siloed roles that require narrow focus in order to be successful at the task at hand. In order for the emergency room doctor to be the best emergency room doctor he or she can be need not calculate the cost of waiting room furniture and time spent on bill collection while treating the patient. The device maker, in order to attain highest and best use, need not contemplate the best way to educate parents about vaccinations and childhood behaviors. These silos will remain—and the healthcare system remain unchanged—as long as we continue to talk at one another instead of with one another.

The healthcare systems that will change the way healthcare is delivered will not be those relying on models and methods and manipulation to coerce patient engagement—the systems that incorporate patients into the infrastructure of their design and management of each department will see the greatest measure of success. In order to engage patients, we must include patients. An included patient is a compliant patient. And including patients—the constituency providers serve—thereby engages providers to put caring back into healthcare and work in collaboration to achieve better outcomes. 

06 February 2013

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

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, 2013 edition will focus on the following themes: the Health Affairs Briefing Reminder: New Era Of Patient Engagement held on Feb. 6 in Washington, D.C. and subsequently released edition of Health Affairs — and — the upcoming Rare Disease Day: Disorders Without Borders to be held worldwide on Feb. 28. Included within these focus areas are topics such as health literacy, drug development, healthcare costs, patient-centered care, and deliberations on what makes one a patient (are we truly ALL patients?).

Email submissions should include 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 Tuesday, Feb. 12 at NOON. Email submissions to theafternoonnapper (at) gmail (dot) com. 

27 January 2013

Learning How To Take No For An Answer

Being an advocate is hard. 

In public, we celebrate the victories. We laud partnerships, and announce accomplishments. We mark honors, and unveil new opportunities. What we don't do is draw attention to our failures. 

For every email sent, there are five more unanswered. For every sponsor whose logo bedecks the ballroom banner, there are ten more who said no. For every grant awarded, there are twenty more for which one was unqualified to apply or deemed unworthy. For every yes, there are a hundred replies no.

To fight for a cause is to be beleaguered by it, for even successes beget problems. To fight for a cause is to work one's self out of a job, for true success means that one no longer is needed. 

Confession: sometimes I wonder what it would be like if I just stopped. What if I went off the radar, stopped pushing, got quiet, took up sewing instead? I could cancel all my doctor's appointments, quit taking my medications, move out even further into the country, write with pen and paper, and see the world from a perspective no farther than the tip of my nose. There would be handmade afghans, and kittens, and tomatoes, and a screen door slamming shut. Life would be as Southern as Eudora Welty, and one day years down the line I'd fall asleep in a lawn chair in the sun and just not wake up.

Or I'd get all bunkered up in a holler somewhere and just be lonely as sin, while wishing I could do more with my life than just waste away into a shell of a bitter old shrew. Either way. I'm not much good at happy mediums. 

The point is this: the next time you are dealing with someone who doesn't have to do what they're doing, who is giving his or her own time to a cause, who is asking you to consider helping—think just a little longer before you answer. Some people say, "Well, we just get asked to help all the time, and we can't say yes to them all." Granted, that may well be true. Consider though what you're being asked for and by whom. Consider the relative magnitude of what you'll give and what those in need will get. And above all else, approach those who are fighting for a cause with an attitude of respect and a willingness to problem solve—perhaps if you can't help you know someone who can.

14 January 2013

Medical Research and the Gaps Between Cause, Treatment, and Cure

I am sick, and I am tired.
I am sick of being an anomaly.
I am tired of fighting against my body.
I am sick of reading headlines about unnecessary, yet well-funded, research.
I am tired of not being considered a sound research investment.
I am sick of competing for attention.
I am tired of being sent home without an answer.
I am sick of doctors who think they know more about a disease than the patients who live with it.
I am tired of doctors who know nothing about my disease at all.
I am sick of money being wasted collecting data that is too vague to provide answers.
I am tired of feeling as though any true breakthroughs will have to come from the patient community.

Every day fibromuscular dysplasia patients connect with one another in a Facebook group facilitated by the international, nonprofit organization FMD Chat, of which I am founder. Every day this group of patients checks in on one another. Every day group members discuss how they're feeling—physically and emotionally. Every day we share test results.

Every day we wonder why no doctor seems more interested in the similarities that are found in our stories. Every day we hope that rather than doctors calculating the percent of patients reporting certain vascular events or peering at biopsies and DNA samples that a doctor will ask us how we feel. Every day we hope for a treatment—much less a cure. Every day we are disappointed.

It grows more difficult not to become bitter.

Fibromuscular dysplasia (FMD) is a noninflammatory, nonatherosclerotic arterial disease that is most commonly seen in women. It may present at any age, but is more commonly discovered when the patient is between the ages of 20 and 60 years old. Just nearly a year ago, on January 30, 2012, I wrote about a FMD patient registry—which so far has cost more than $180,000—and at the time had yet to reveal any information that was necessarily "news" to the medical or patient community—at least those who were familiar with the disease. Of the first 339 patients enrolled, patients reported high blood pressure (66 percent); headaches (53 percent); rhythmic ringing in ears (30 percent); dizziness (28 percent); a whooshing sound in the ear (24 percent); neck pain (22 percent), according to data released at the International Symposium on Endovascular Therapy

Per Dr. Jeffrey Olin's presentation at ISET, "there has been virtually no new information in the last 30 years" regarding FMD, as the result of "small case series, case reports (the majority of published papers are single case reports), nothing on pathogenesis, little on genetics, nothing on imaging, little on methods of angioplasty, no new classification since Mayo Clinic 40 years ago." In saying as much, Olin does a bit of a disservice to his own prior publications on FMD and publications by those doctors oft associated with FMD. However, the 2012 conclusions drawn from the registry were widely familiar—FMD is often found by accident after a stroke or transient ischemic attack; it should be looked for in young patients with high blood pressure or migraine-type headaches; it can be diagnosed with angiography, CTA, or MRA; angioplasty can be used to open up affected arteries if done early enough; lood thinners and antiplatelet drugs may be prescribed; FMD can lead to a tear in the artery or permanent kidney damage; it is unclear what causes FMD; FMD is an underdiagnosed disease.

For patients to enroll in the registry they must travel to one of a handful of participating centers. Of the 339 patients included in the ISET report 148 were enrolled at the Cleveland Clinic in Ohio; 68 at Mount Sinai in New York; 35 at the University of Michigan; 32 at Alliance Health in South Carolina; 20 at North Central Heart in South Dakota; 18 at Ochsner in Louisiana; 18 at the Mayo Clinic. Data indicates that 328 procedures were performed on 171 of the patients enrolled, with 54.3 percent receiving Percutaneous Transluminal Angioplasty; 21.3 percent receiving Percutaneous Transluminal Angioplasty and Stenting; 8.8 percent receiving a vascular bypass; 4.9 percent receiving endovascular repair of an aneurysm; 2.7 percent receiving open surgical aneurysm repair; and 7.9 percent in the "other" category for therapeutic procedures. Of these 171 patients, 73.2 percent's target vessel was the renal artery. 

Such findings are of clinical value for those unfamiliar with FMD, and the conclusion that FMD presents in the carotid and/or vertebral arteries as often as the renal is indeed intriguing and aligns with the conclusion that "the most common presenting symptom/sign was hypertension followed by headache, pulsatile tinnitus, and dizziness." Patients among the FMD Chat community are well-acquainted with these symptoms; however, there remains a significant gap between recognizing the prevalence of these symptoms and treating them. 

Hypertension in FMD is caused by renal artery stenosis, which causes the kidney to emit renin, a chemical that raises the blood pressure. This hypertension often is treated with anti-hypertensives widely used in the general population. The problem is that FMD related hypertension often is resistent, requiring multiple medications and high doses to manage. These drugs—as with all drugs—come with their own sets of complications, and to many patients fulfill the cliche "the cure is worse than the disease" in terms of physical effects, as patients typically do not feel hypertension, known as the silent killer, while anti-hypertensive side effects such as swelling, coughing, chest pain, irregular heart beat, fainting, nausea, and shortness of breath are much more noticeable. Headache related to FMD becomes complicated by the fact that patients generally are advised not to take NSAIDs, which can cause kidney and stomach damage. Those with migraines are further restricted if prior vascular events such as uncontrolled high blood pressure or stroke contraindicate vasoconstrictors such as the commonly prescribed Imitrex. The Federal Drug Administration has approved no drug to treat tinnitus, and, based on what patients have reported within the FMD Chat community, dizziness typically appears only intermittently, making it a somewhat vague symptom to treat in any manner other than a directive to "stand up slowly." 

Granted, only about 250 of the approximately 7,000 rare diseases in the world have FDA approved treatments; however, treating symptoms of a disease is a different exercise than treating the disease's underlying cause. The FMD community is in dire need of measures to improve patients' quality of life. Research into the disease's genetic factors, while needed, does nothing to help patients currently living with the disease. And so a year after first issuing my plea, I say once again, "More must be done across the related specialities to address the issues that many FMD patients struggle with on a day-to-day basis including crippling fatigue and pain, the inability to work and lost income, depression and anxiety, isolation and fear. These issues are imminent threats to patients' overall health, and without a concerted effort to holistically treat patients there may well be fewer patients willing and able to participate in research studies."

What has changed in this year's time is that FMD Chat, then a fledgling organization, has grown, and that I am making it a personal mission to improve current patients' quality of life. Part of this mission is selfish—I am an FMD patient, and I want better care for myself. However, I also want better care for the hundreds of FMD patients who have made FMD Chat part of their support network and for all the patients FMD Chat has yet to reach. This mission is about making a difference and caring tenaciously for a group of patients in need, a group of patients that I have come to consider my friends and family.

The Problem of Being a "Patient"

There is a woman who graduated in the top 10 percent of her high school class and was accepted into the University of North Carolina at Chap...