STANFORD MEDICINE 2012Our e-Patients Stanford Medicine X | Alliance Health e-Patient Scholarship Program 2012 Artist: Regina Holliday SPONSORED BY ALLIANCE HEALTH NETWORKS Definitions e-patient (e·pa·tient/e‘pāSHənt/): 1. A health consumer who uses the Internet to gather information about a medical condition of particular interest to them, and who use electronic communication tools (including Web 2.0 tools) in coping with medical conditions. 2. Friends and family members (e-Caregivers) who go online on behalf of patients. scholar (schol·ar, /’skälər/): 1. A specialist in a particular branch of study, esp. the humanities; a distinguished academic: "a Hebrew scholar". 2. A person who is highly educated or has an aptitude for study. e-patient scholar (e·pa·tient schol·ar, /e‘pāSHənt ’skälər/): 1. A specialist and expert who is highly educated in his or her own medical conditions and who uses information technologies (e.g., Internet tools, social networks, self-tracking tools) in managing their health, learning from and teaching others. 2. (Stanford Medicine X | Alliance Health e-patient scholar) An educator and role model for other patients and health care stakeholders. i Preface Having a vision is one thing: bringing that vision to reality is another thing entirely. The Stanford Medicine X | Alliance Health Networks e-patient Scholarship program simply wouldn’t exist without the support and vision of Amy Tenderich, David Goldsmith and the entire Alliance Health Networks family. On behalf of the Stanford Medicine X organization, I would like to acknowledge and thank Alliance Health for not only their generosity, but their vision, understanding, and leadership in the e-Patient movement. I would also like to thank the following individuals who have made vital contributions to the success of Stanford Medicine X and its patient-centered initiatives: John Stafford (Director of Program Outreach), Bassam Kadry, MD (Director of Technology Discovery), Regina Holliday, Heather Alva, Matt Erlendson and Lorena Rincon-Cruz. Sincerely, Larry Chu, MD, MS (BCHM), MS (Epidemiology)
Executive Director, Stanford Medicine X
Associate Professor of Anesthesia
Stanford University School of Medicine ii Sponsors We gratefully acknowledge the sponsorship of Alliance Health Networks About Alliance Health Networks
Alliance Health uses the power of social networks to help
consumers more actively navigate and manage their care.
Its condition-specific websites and mobile apps connect more
than one million patients and caregivers, unlocking new
opportunities to foster engagement, peer support and
knowledge-sharing. Kadry Foundation e-Patient Travel Assistant provided by the Kadry Foundation The Kadry Foundation is a non-profit organization dedicated to
advancing patient-centered design and participation in medical
education, research and health care. Medicine X Innovator-level Sponsors include: Stanford Anesthesia, a world-leader in perioperative medicine
Stanford Hospital & Clinics
iii Alliance Health Networks: Fostering Patient Voices at Stanford Medicine X By Amy Tenderich Alliance Health Networks stands behind the Patient Empowerment Movement, which according to Wikipedia, “asserts that to be truly healthy, people must bring about changes in their social situations and in the environment that influences their lives, not only in their personal behavior.” The pillars of patient empowerment are: • Patients cannot be forced to follow a lifestyle dictated by others • Preventive medicine requires patient empowerment for it to be effective • Patients as consumers have the right to make their own choices and the ability to act on them Alliance Health Networks is an innovative social networking company whose mission is to help improve health outcomes and lower costs for patients, ultimately facilitating a more consumer-centric health care industry. We own and operate a growing portfolio of distinct social network sites that today serve over 1.5 million registered members across 51 health conditions. Each site utilizes social and mobile elements to empower patients and caregivers with connections to supportive peers, personalized information, and relevant products and services. As a company committed to patient empowerment, Alliance Health seeks out channels and public forums through which we can contribute to the movement. We believe that Stanford’s exciting new Medicine X Conference is a groundbreaking event that truly advances this cause. While other conferences talk about emerging new approaches to health care and enabling technologies, they all-too-often fail to include patient voices! iv In contrast, under the leadership of Dr. Larry Chu, Stanford’s Medicine X organizers understand that patients—the people living daily with compromising health conditions—are at the heart of healthcare reform, and their perspective is vital to everyone’s success. Stanford’s Medicine X Conference is a unique gathering of thought leaders in health and technology, where the voice of the patient takes center stage. We are proud to sponsor the Alliance Health Networks ePatient Scholarship Program, which enables dozens of patient leaders to not just attend Medicine X, but to actively participate in a speakers’ panel and a design track in which patients help craft tools for better chronic illness care. v C HAPTER 1 Genesis The concept of an academic conference that is designed for everyone, including patients, defines the very mission of Medicine X. We seek to unite all health care stakeholders to use emerging information technologies and improve health. S ECTION 1 Prologue unearthly landscape of glowing space rocks, desert cacti, lizards, and sandstone formations. The tiny flies and bigger bugs that swarm the candlelight at night are the only things that remind me I’m not alone. It’s quiet here. I have time to think. I walked along the stony ridges and desert outcroppings with my guide Guillermo yesterday morning. He’s an archeologist by training and an amateur paleontologist. The ground that we walk over can tell us so much about where we have been, he said. We just have to take the time to uncover, layer by layer, the stories that it has to tell. I learned that I also change the landscape just by being here. For example, the cryptobiotic crust—a combination of singlecelled bacteria and algae and multicellular lichens, mosses, and fungi—can take up to 50 years to regrow after a single footstep. Tread carefully, he tells me. Yet the terrain felt less foreign and fragile last night, not only because I had walked the earth, touched the soil, and smelled the burning pinyon pine. The hotel had made a bed for me on the rooftop of my room. I lay there and looked at the stars, infinite numbers of them, swarming, moving, and twinkling. The moon rose from one corner of the room and moved slowly to the other. I asked Guillermo, why can I see so much more, like I’m seeing the night sky for the first time? He mentioned something about lack of city lights and pollution. That made sense. Yet I 7 By Larry Chu, MD
The genesis of Medicine X and our e-patient program began with my work as organizing chairman of Medicine 2.0 @ Stanford in 2011. After that conference, I embarked on a retreat to the Utah desert to recharge and renew my mind and body. During that time, I began to explore how we would bring Medicine X into the world. Below is a narrative describing that process. September 23, 2011 I’m content. Four and a half hours away from Las Vegas, in the heart of the Utah desert, where the stone slot canyons glow red at sunset, I’m finding inspiration. I’m out of my comfort zone, away from my known world. My cell phone doesn’t get a good signal and the Wi-Fi isn’t working. I’m a foreigner here in an wonder how much I have missed simply because I haven’t taken the time to look. What does this all mean for Medicine X?
In my mind it is a constantly evolving vision. But the desert, the stars, and the moon remind me to take it all in. There is so much for me to learn about the landscape of emerging technology and its potential impact on medicine, patients and the patient-healthcare cooperative relationship. I’m excited to uncover the stories of how people are using social media, the Internet, and mobile technologies to solve real world health problems. Medicine X is my chance to take the time to look deeply and shine a light on the most interesting and innovative people and stories. I’m eager to begin the work. We are all here on a journey together for a reason. If you are reading this, you are part of that journey. Write me, tweet me, call me, talk to me. I want to learn from you and be changed by you. I can’t wait to see where we end up in less than a year from now when we welcome our guests to the first Stanford Medicine X conference! 8 S ECTION 2 Imagining Medicine X literature. Dissemination of their knowledge spurred further innovation by others down the pyramid of medical science, eventually leading to changes in clinical practice and adoption of new treatments and therapies by the folks at the base of the pyramid: patients as well as the physicians and health care providers on the frontlines providing treatment every day. Emerging technologies and models of innovation In thinking about Medicine X and our mission, we considered the notion of exploring emerging technologies at the intersection of health and medicine with new models of innovation in mind. For instance, why couldn’t innovation in medical science spark from the bottom up, engaging all health care stakeholders in the process, with the best ideas and hypotheses to be tested by research labs and clinics? Patients and their caregivers are at the frontlines of disease and have considerable expertise in their own health problems. Could patients and their caregivers share their stories and provide insights to generate hypotheses and initiate research questions that might eventually lead to improved health outcomes? Could patients themselves initiate research that advances medical science? Recent work, such as the patientinitiated lithium observational study described by Wicks et al., certainly suggests it is possible. Novel research collaborations that aim to partner with patients, such as the C3N network, are also leading the way. Unprecedented opportunity and challenges 9 An academic conference designed for everyone By Larry Chu, MD The application of new technologies in medicine isn’t something particularly novel. We have seen the impact of technology on medicine for centuries, from the invention of the stethoscope by French physician René Laennec in 1817 to the discovery of the antibiotic penicillin by Scottish scientist Alexander Fleming in 1928. These discoveries revolutionized health care by providing new ways to diagnose and treat human diseases. One common theme in examining the development of major advances and technologies in medicine is that their genesis usually emerged from the top of a scientific pyramid led by physicians and scientists working in their labs or clinics. These innovators, through luck and hard work, gained their insights and then published their findings in the scientific Emerging technologies today are disruptive in ways the stethoscope and penicillin could not have been. The rapid adoption of these tools by vast numbers of users is one example. For instance, social technologies powered by the Internet and mobile devices amplify the spread of ideas and the building and promotion of social capital to engage and support patients with common conditions. Communities of practice, such as Inspire and Patientslikeme, provide common ground for patients to seek advice, and some even empower patients to track the symptoms of their disease and share with their supporters online. Online networks and the collaboration they promote have been shown to improve health outcomes. For example, the ImproveCareNow network of patients and physicians has increased the percentage of patients in remission with ulcerative colitis and Crohn's disease from 48% to 75% through sharing of patient care data and ideas. In addition to social technologies, there are growing repositories of personal health and genomics data captured through electronic medical records, personal health records, and personal genomics services such as 23andme. Add to this the data being collected through consumer-facing, selftracking devices such as the Fitbit personal activity monitor, Withings and Aria networked weight scales, Zeo sleep monitors, and the plethora of other health self-tracking devices and mobile apps coming to market in 2012. The amount of human health data captured by these devices can be impressive. For instance, the Bodymedia FIT monitor captures and analyzes 5,000 data points per minute, providing information on your body's activity level, metabolic rate, and sleep patterns in real-time. We live in an era with unprecedented creation of vast amounts of human health data that could potentially reshape health care and even the way medical discoveries are made. And yet obstacles persist that remain great challenges in realizing this full potential. Vast networks of big data need integration and structure, yet health care data rarely crosses institutional boundaries. Selftracking devices and mobile health applications lack uniform standards and open sharing of data to enable linking of data for use across devices and platforms. While much of the innovation in self-tracking has come from user-driven inquiries from communities such as the Quantified Self movement, the ideas haven't yet sparked upward to engage large numbers of academic researchers and clinicians in the scientific community. While online communities of practice have been shown to improve health outcomes, the attitudes of physicians and health care providers to recommend these resources for their patients have not been adequately studied. Evolving roles for patients and health care providers At Medicine X, we see the evolving role of the patient moving from a passive follower to an active participant in their own care. Patients should not only instigate collaboration but also share their knowledge and in some cases track and share their own health information to gain insights into their health 10 problems. We see the evolving role for physicians and health care providers as one in which they work in partnership with patients as collaborators, to identify individuals who might benefit from online peer-to-peer health networks and engage and recommend them, and to consider ways to incorporate patient-initiated collaborations, such as self-tracking and Nof-1 trials, into the health care plan. We see the role of emerging technologies as the tools that will help empower this change. Thinking beyond numbers and trends Medicine X is a catalyst for new ideas about the future of medicine and health care. We seek to include all health care stakeholders (patients, health care providers, researchers and technologists) and bring them closer to the design and innovation process. The initiative explores how emerging technologies will advance the practice of medicine, improve health, and empower patients to be active participants in their own care. The “X” is meant to encourage thinking beyond numbers and trends—it represents the infinite possibilities for current and future information technologies to improve health. It represents a crossroads, bridging disciplines and perspectives to create new linkages and relationships that will advance health care and medicine. Where other technology conferences may focus on consumer trends or business-to-business needs, Medicine X will bring a broad, academic approach to understanding emerging technologies with the potential to improve health and advance the practice of medicine. Drawing on the best traditions of Stanford—an incubator of Silicon Valley—the conference aims to ignite interdisciplinary thinking and collaboration while encouraging a rigorous, quantitatively driven approach to understanding emerging technologies. In other words, the conference hopes to encourage “moon shot” thinking while actually offering the intellectual tools to make those ideas reality. Medicine X is an academic conference designed for everyone. 11 S ECTION 3 Heath care’s least used resource University. He joined me recently to talk about his work–or, as he prefers to label it, his passion. What’s are the major paradigm shifts you’re seeking? Right now, health care professionals are trained to be the only ones who know what’s happening. But that’s changing. Information is present more and more for patients, so they can not only start asking smart questions but also have the means to vote with their feet, as we say. People are getting into a position to democratize health care, just like they democratized the music industry, and the travel industry, and even, in the case of the Arab Spring, totalitarian regimes. The next frontier will be about data being available anytime and anywhere. We will completely reshape health care from what I call an “ego system,” in which a patient has to come to doctors, nurses and health care institutions, to an ecosystem, through which we’ll bring health care as near as possible to patients, via the Internet, ehealth, monitoring, genome sequencing, etc. The treatments and services that are needed in a central way will be a lot more concentrated. What do we stand to gain by giving patients a more central role in their own care? Let’s start with the obvious point, which is not often stated: Patients are the least used resource in health care at present. There’s no possibility of cutting the 10-minute consultation to five minutes, I think. So for that, we have to come up with smart ideas. Right now, we’re basically doing a lot of the same 12 By Julia James The challenges facing health care are tremendous. They include sharply increasing cost and demand, combined with a shortage of primary-care providers and widespread budget cut. And yet, Lucien Engelen argues, the system is moving too slowly toward the only real solution: inviting patients to take a more active role in their own care. Medicine X has proudly involved patient advocates in every aspect of our conference, inviting them to help rethink and redesign health care. Patients have played a crucial role in developing our program–and they’ll play a crucial role when we convene in September, both as speakers and attendees. Engelen is founding director at the Radboud REshape & Innovation Center, located in the Netherlands, and he is also a faculty member in the FutureMed track at Singularity things that we did 60 years ago. We bring cardiac patients into our outpatient clinic to take their weight and their blood pressure, for example, even though they could easily do those things at home, giving clinicians time to do other stuff. Giving patients access to their own data, in terms of electronic health records and correct, understandable, findable information, will improve quality and also prevent error. Do you think practitioners are in some sense threatened by more engaged patients? I think that’s true for a lot of health care professionals at present. A lot of them have trained for 17 years, only to be confronted in a 10-minute consultation with somebody who steps into the room with five printouts from Google. That’s the negative approach. On the other hand, I see a lot of physicians and a lot of health care professionals who are stepping into this arena with an open mind and an understanding that a new way of doing things could help all of us. What’s the value in attending Medicine X? Two things: First, I think Dr. Chu is great. He’s enormously passionate about doing things in the right way, with high quality. Second, I’ve been to Stanford several times—I was there three weeks ago—and again and again, what strikes me is that there’s some kind of vibe, not only on the academic level but also in terms of startups. Looking to the program that’s being set up, I can say that the conference will be a hotspot where you can dive in for a few days and hang out with people who have the same needs, the same vision, and the same drive to fix things. This is where the future is being sketched out. And that brings a giant pill of inspiration, I think. What single change might bring you a sense of accomplishment? Over the last two years, I’ve sensed more and more that patients are getting the role and also the credit in coredesigning health care. You can see that progress happening at conferences like Medicine X, where organizers are for the first time bringing patients to the stage. I’ll be happy when I don’t have to stress over and over again, for all the other health care conferences, that patients should be included in the program—invited to join as patients, not as professionals who are also patients. Lucien Engelen is on the advisory board of Stanford Medicine X. You can read more about his patients included initiative here. 13 S ECTION 4 Ask Paxton been built before. According to Bill Bryson, “The finished building was precisely 1,851 feet long… 408 feet across, and almost 110 feet high along its central spine–spacious enough to enclose a much admired avenue of elms that would otherwise have had to be felled. Because of its size, the structure required a lot of inputs–293,655 panes of glass, 33,000 iron trusses, and tens of thousands of feet of wooden flooring…[2]” Paxton, without any formal training, changed the face of London and, in many ways, global architecture. Building the Crystal Palace was not easy. It was designed as a glass structure, large enough to ensconce a bevy of trees. Nothing that large had ever been made of glass before. Traditional glass was too costly and would have collapsed under the weight of the building. So Paxton innovated. He had builders use glass made with the new cast plate method. The question of sanitation came up. City officials were concerned about the waste produced by the throngs of visitors. So Paxton innovated. He insisted the Palace contain George Jennings’s newfangled flushing toilets. It seemed there was no challenge which he would allow to prevent the construction of his vision. The Crystal Palace, as it turns out, is not as much a triumph of construction as it is innovation. Joseph Paxton gained so much acclaim as an innovative problem solver that “ask Paxton” became a common retort when the people of London asked challenging questions [3]. 14 By Nick Dawson London’s regents wanted something grand for the Great Exhibition of 1851. They wanted a building unlike any the world had seen before. Architects and designers from around the country submitted proposals, some reaching for new heights, others for girth. Out of 245 submissions, only two were in scope of the commission’s vision [1]. Some time after the formal submission period was over, a young garden designer and greenhouse builder named Joseph Paxton visited London. His design was too late for official consideration, so he had it published in London’s newspapers. The public loved it. So much so, the commission ignored their own deadline. It became of the winning design for the Crystal Palace. The Crystal Palace, the main hall for the 1851 Great Exhibition, was a massive structure. Nothing like it had ever How can I get my garden to grow? Ask Paxton. How should I cross the river today? Ask Paxton. What does Joseph Paxton have to do with Medicine X and epatients? Everything! Paxton was a master innovator. He took his knowledge of greenhouse design and scaled it to produce the largest glass structure of its kind. Today, innovation is happening throughout healthcare. 2010’s Patient Protection and Affordable Care Act provides for new models of patient care, population health and funding. The Centers for Medicare and Medicaid services have an office dedicated to innovation. Silicon Valley, home to Stanford, Apple and Google is home to Rock Health, one of the first venture capitol funds for healthcare innovators. Kaiser, Mayo Clinic and Johns Hopkins all have their own innovation offices. So where do the e-patients fit in? At 2011′s conference at Stanford, IDEO’s Dennis Boyle spoke about innovation thinking. In healthcare, the future will belong to those who can see ideas in one place, and iterate on them to create something new and meaningful. Boyle told the audience about the need for healthcare providers to embrace the extreme use case. He flashed up a slide of a stocking clad leg disappearing into a bright red high heel shoe. If you want to make the best shoes, ask someone with a foot fetish to review them, they know more about shoes than you do. Healthcare is not any different. If we want to build a better exam table, waiting room, glucose monitor, IV pump, implantable cardiac defibrillator, or simple bandage, who better to ask than patients? The past few years have given rise to a new term, e-patients. These paradigm changers are empowered, engaged, informed, and most of all, desire to participate in their care and planning as an equal peer. An e-patient can be someone who googled symptoms before going to the doctor, or someone who studies their lab results with the veracity of a Rhodes Scholar. Increasingly, e-patients represent voices from the extreme use cases of healthcare. Many have spent hours researching their diagnosis, medications and treatments. They stay up late at night to chat online with someone around the world who has the same condition. e-Patients attend conferences. They tell their stories through art. And we need to listen. Joseph Paxton was a passionate self-advocate. Rather than relying on London’s building committee, he unveiled his design directly to the people of London. Does that sound like e-patients to you, too? This year, Medicine X will make 35 scholarships available for e-patients to attend the conference. e-Patients are engaged, informed, empowered and most of all, connected. Just like Paxton, e-patients know the power of self publishing, sharing expertise and involving others. Having epatient scholars at Medicine X means the event will be patient-focused, all the way. 15 The Crystal Palace pushed the bounds of what people thought was possible. Medicine X is all about healthcare transformers–those boundary busters who think beyond what is possible today, and create the future they envision. This year’s Medicine X will feature presenters who don’t settle for the status quo. Instead, they are fueled by a passion to design patient care experiences in a whole new way. What is your Crystal Palace of healthcare? What system, or process, or technology would you create? Would you take it to the people like Paxton? How would it change the world? How can we create the future of healthcare? Ask e-patients! 1 Wikipedia: Joseph Paxton
2 Bryson’s ‘Short History’ Of Household Objects
3 Bill Bryson’s At Home 16 C HAPTER 2 The People The success of our Stanford Medicine X e-patient programs is uniquely dependent on our e-patient scholars. We hope our attendees will take a moment to read their stories before the conference in September 2012. Our e-patient scholars have important insights to share. S ECTION 1 Our Advisors I’m incredibly inspired by Sean. He is so intelligent, passionate, and articulate about his work. He also tells me when I get it wrong and isn’t afraid to ask me to rethink my decisions (sometimes at the 11th hour) in order to get things right. I’m so honored to have someone like Sean helping Medicine X to achieve its full potential! Hugo Campos
Patient, Designer “After the day I fainted on a train platform, everything changed. I was thrown into a tailspin of doubt and forced to reevaluate my life,” says Hugo Campos, 45. The two misdiagnoses that followed and the urgent implant of a Hugo Campos cardiac defibrillator made Campos realize how crucial it is for patients to engage in their own health care and in shared decisionmaking with clinicians. In the months that followed, Campos started a blog, founded the ICD User Group and embraced a new world of patient advocacy through social media. Campos is passionate about participatory medicine, connected health, and patient empowerment through the use of technology. He also advocates for the rights of patients with pacemakers and implantable defibrillators to gain electronic access to the data collected by their cardiac devices. A native of Rio de Janeiro, Campos moved to the United States in the early ‘90s to study graphic arts. He’s worked in many roles at big and small 18
Sean Ahrens
Patient, Designer, Blogger Sean is the designer and developer of Crohnology.com, a social health network for patients with Crohn’s & Colitis. Crohnology lets patients share and learn what treatments work for others, track their health, and meet Sean Ahrens others near them. Sean runs the SF Bay Area Crohn’s & Colitis Meetup Group (sfibd.org) and is a frequent counselor at Crohn’s & Colitis summer camps, where he mentors youth with IBD. Sean blogs about Crohn’s & Colitis and patient-centered health tech at blog.crohnology.com and tweets at @Crohnology. marketing and advertising agencies in the San Francisco Bay Area. He resides in Oakland, Calif. There are so many things I admire about Hugo. He is a passionate patient advocate, articulate and engaging speaker, and shining example of how patients can engage physicians in a participatory medicine model of health care. I recently had lunch with Hugo and noted that he also has a talent for eating all his vegetables (something at which I fail miserably!) her undergraduate degree in journalism from the University of North Carolina-Chapel Hill and her M.A. in Liberal Studies from the University of North Carolina-Greensboro. Kucharski blogs at http://afternoonnapsociety.blogspot.com and helps provide global peer-to-peer support for fibromuscular dysplasia patients at facebook.com/FMDChat. Sarah is just one of these amazing individuals I meet once in a blue moon and had an instant connection with. I met Sarah several times at the last conference I organized, and each time I felt drawn to talk with her and learn from her. Sarah’s emails always spark my interest and get my creativity flowing. I can’t imagine doing this without her! Sarah Kucharski
Patient, Writer, Blogger Sarah E. Kucharski, also known as AfternoonNapper, is an award-winning writer, reader, editor, teacher, cynic, comic noir, pragmatist, gardener, traveler, animal lover, wife, only child, foodie, and sports fan prone to afternoon Sarah Kucharski naps (or just naps in general). She lives with a long medical history including triple bypass surgery, a stroke that left her without pain or temperature sensation on her right side, loss of her left kidney, four cerebral aneurysms, a gastric rupture, and a diagnosis of Intimal Fibromuscular Dysplasia, which is a rare version of a rare disease. She blogs about everything mentioned above and then some. Sometimes she’s funny. Sometimes she’s not. Regardless, she’s herself. Kucharski has spent the past 14 years as a professional journalist. She earned Stephen Wilkins, MPH
Patient, Caregiver, Blogger A consumer health behavior researcher and former hospital marketing executive, Stephen’s role as an e-patient began in 2004 when his wife was diagnosed with Stage 4 Lung Cancer. Steve Wilkins While both have been in health care for years, neither of them was prepared for how hard it would be to navigate their way through the health care system. Today his wife is a 7 year survivor, and together they work to help others deal with cancer. 19 In addition to his patient advocacy work, Stephen researches, blogs, and writes extensively about ways providers can do a better job engaging patients and their families in their own health care. Posts from his blog Mind the Gap regularly appear on KevinMD.com, Wall Street Journal Online, Better Health, Fierce Health-Hospital Impact and the American College of Physicians websites. He has a Masters in Public Health, Medical Care Organization, from the University of Michigan. Stephen has a sharp and insightful mind focused on helping patients and health care providers work together to improve health. During my last conference, I could always count on his hand in the front row to pop up and ask important questions that advanced the audience’s understanding and challenged speakers to clarify and expand their statements. I’m such an admirer of his blog posts and writing, and I consider myself extremely fortunate to have Stephen on our Stanford Medicine X e-patient Advisory Panel! members of the e-patient panel to help weave patient voices and interactions into the DNA of Medicine X. Nick is passionate about the patient experience as a driving force in health care, and I can’t think of a better resource and liasion for the members of our Stanford Medicine X e-patient Panel. Nick Dawson
Director of Community Engagement, Bon Secours Virginia Health System
Special Liaison to the e-patient Advisory Panel I’ve asked our Stanford Medicine X Advisory board member, Mr. Nick Dawson, to work with me and the 20 Nick Dawson S ECTION 2 Design Track item designed to get me up from a chair: the Upeasy Lift Assist. It costs around $100 and weighs about 10 pounds, which is too heavy for me to carry. There needs to be a wider, more modern selection of items, creatively and thoughtfully designed using modern technology. I have no doubt that a team of IDEO designers and Stanford faculty can shape the future of assistive devices for people who need a little help getting around. I have worked at Stanford Hospital and the School of Medicine for over thirty years, so I understand how health care delivery works (or, for some patients, doesn't work). I also have a background in fine arts, and have collaborated with the Stanford Biodesign program. My brain is wired to bring a creative approach to solving health care problems—I even have a little experience working on that. I hope the combination of health care experience and right-brain thinking will be an asset and a complement to the IDEO Innovation Challenge. Designing better "aids" for the disabled By M.A. Malone I'm 63 years old and have type 3 spinal muscular atrophy. I live alone and work full-time for Stanford School of Medicine. Life is definitely a challenge. M.A. Malone I can no longer get up from a chair or sofa on my own, and stairs—even curbs —are impossible. I tire easily when I walk, and I constantly worry about falling. I've dealt with these issues for decades, and soon, there will be legions of baby boomers facing similar challenges. I have no doubt that the demand for well-designed assistive devices will grow and grow. There are already "aids" for the disabled, but the selection is uninspired and overpriced. For instance, I've found only one Using health IT to realize health as a human right By Erin Gilmer My unwavering endeavor is to help realize health as a human right for all. Erin Gilmer Part of ensuring this right means 21 ensuring access to high quality and culturally sensitive care. New technologies can and have already advanced this right across the world, whether through informational websites and blogs, telemedicine capabilities, public health tracking through social media, or applications that help patients engage in their health care. I want to continue to add to this, and Medicine X is one way I can. As a patient navigator and health policy attorney, I regularly face the barriers patients encounter and have been involved in the development of policy to bring technologies forward to the public. As a blogger and the founder of the Austin chapter of Health 2.0, I try to engage the community to explore these issues in the context of human rights and policy. I think Medicine X will be an amazing conference to attend given my background, passion, and interests. An e-patient myself, I am substantially impacted by health technologies that have the potential to change my life in ways never imagined. I have 4 autoimmune diseases, 10 chronic health conditions, have had 4 surgeries (not related to these issues) and have been in hospitals at least 25 times. For all of my conditions, I keep a detailed personal health record which includes the results of every test I've ever had (and have graphed some of them to show trends) and notes regarding each issue. This PHR also includes all of my hospitalizations and surgeries, including the date of onset/ diagnoses of my conditions. I am in constant contact with my doctor and other health care providers via email. I try as many mobile and web apps for health that I can. And I research and follow the development of other health technologies, such as telehealth solutions and medical devices. However, these solutions and the effort I expend on my care are not enough, and I know they are not the best way given the technology at our fingertips. Though HIT promises to make access to records easier, this will be a long time coming considering the challenges of adoption and interoperability. In the mean time, I can’t find an easy way to get my health care providers to collaborate and consult with each other. I find that some will individually respond to email, but many won't offer their email or they are too busy to communicate. This leads to disparate care, and I am left as the middleman helping each understand the treatment suggested by the others. I would like to find a way to engage health care providers in collaboration with patient care that would not necessarily mean just inputting medical records into an EHR and that would not be overly time consuming or burdensome. I’ve found many doctors are resistant to embrace technology, and this makes it very frustrating for me as a patient who knows programs out there might help my care. There are mobile and web applications, devices, and other tools that empower me as a patient. But they are disconnected from each other, meaning I cannot expect my doctors to engage in learning each tool with me as we navigate my health journey. Even those doctors who are tech savvy and willing to try new technologies have trouble leveraging these innovations to 22 provide the best care. And, like doctors, patients are having to learn how to use the HIT available to their best advantage. days post-op, fulfilling the visualization of my dreams: I ate a turkey sandwich at the top. My experience at Stanford Medicine 2.0 last year evoked many of the same memories and experiences. As it turns out, medicine at Stanford still operates in a different realm of possibility. Surrounded by innovative ideas and the rare assemblage of pioneering medical minds that this conference attracts, I felt a familiar feeling—of once again, eating a turkey sandwich at the top. And the view was equally breathtaking. As a patient aspiring to transform thousands of hours navigating a hospital bed through the OR's, recovery rooms, and floors of Stanford, I hope to continue on my journey here–participating in the next emerging epoch of care delivery in medicine. One in which patients, their families, and caregivers can all contribute new knowledge and data to the point of care. I am a student at UC Berkeley and the author and project director of a multi-year pilot study at UCSF, the Robert Wood Johnson Foundation’s Project HealthDesign initiative, which has helped bring some of these patient dreams to life. And what a surreal privilege it has been to catch a small glimpse of this future in action, testifying to the early findings before a committee in Washington, DC, and at a White House Summit on Patient Access to Health Information. We gave 30 patients with Crohn's disease each an iPad, FitBit Activity Monitor, and Withings WiFi weight scale, with which they’ve collectively captured tens of thousands of data points 23 The point of care: weaving patient narratives into the social fabric of participatory medicine By Nikolai Kirienko As a teenager, Lucile Packard Children's Hospital at Stanford saved my life. I was hospitalized at Children's Nikolai Kirienko Hospital, Oakland with a full bowel obstruction, unable to eat for nearly 6 months. I was told that the only way I would ever eat again was if I consented to a foot-long midline incision along my belly to remove the obstructing scar tissue in my gut. I was terrified. That is, until I traveled across the Bay to Palo Alto. I discovered quickly that at Stanford, medicine operates in a different realm of possibility. Where others had told me minimally invasive surgery was unproven, and even impossible in my case, one of the only pediatric laparoscopic surgeons in the Bay Area at that time–at Stanford LPCH–put me at ease. In fact, he did better than that. After half a year in the hospital, I had my surgery at LPCH and climbed Half Dome 17 on the progression of their care over 7 months—via a companion iPhone app, on the iPad, and via SMS. Patients captured more than 6 data points a day on average, spanning medication concordance, pain, sleep, energy and stress, in addition to daily weight and steps taken per day. Visualized on the iPad for each clinical encounter, this data empowered patients to communicate how they felt between appointments, leading to better care coordination through a more detailed and accurate patient narrative at the point of care. During an infusion one day, discussing the iPad study with my nurse, I befriended a patient with pancreatic cancer, who described his condition as similar to Steve Jobs’. He lives alone, away from his adult children, but he has a condition that can leave him paralyzed on the floor after a fall. He shared a system with me that I found ingenious. He sends out a text message every night to six people: a doctor, a nurse, his two adult children, and two friends. If they don't hear from him by a certain time, they're instructed to call. If he doesn't answer, they're instructed to call his neighbor who has a key. If he doesn't respond, they call the local non-emergency line of the Berkeley PD. He coordinates all of this from a feature phone, every single day, with templates for different status messages. He said, quite proudly in the end, “In the event of an emergency, my kids don't have to drop everything and come racing over. They can live their lives, and I can live mine.” I lost my best friend with Crohn's disease, a fellow student at UC Berkeley, to a similar situation last year. He was very ill, but lived home alone. Everyone was so used to his being unavailable and in 'hibernation mode' that when he passed away, no one knew until two days too late. His family said I received the last text message he ever sent, “Dude, are you up?” at 1:30 am on his last night. I was barely awake, but rolled over in bed, and thought to myself, "I'll call you tomorrow, man." I will be at least slightly heartbroken by that missed opportunity for the rest of my life, and I desperately hope to spare others a similar experience. Communicating health status passively is a big, big deal, and could benefit from a simple, light weight solution. I have the same basic problem myself: sharing daily health status is a high friction activity, especially when you're severely chronically ill. It's not fun to burden people with the knowledge that you're doing very poorly, especially when it's a persistent state. Clearly some people need to know—but finding the right context is a constant challenge. I would love to share these experiences with the Medicine X conference, and eagerly await the collaborative experience of the IDEO design challenge. Thus, I look forward to weaving the next chapter of my journey–conferring with fellow travelers along the e-patient road at Stanford. 24 The best patient is an informed patient. Why not give us access to our data? By Heather Kern I was a caregiver to two ailing parents for 15 years and then became a chronically ill patient myself when I Heather Kern was diagnosed with heart disease and later implanted with an ICD. Through my experiences, my eyes were opened and I realized that our current health care system is greatly flawed. I am a huge proponent of change in health care. I spent years reading everything I could, blogging, and participating in online groups regarding new changes in health care or how to get the best care for myself and family. I became so passionate on the subject that I left my job in the software field and became a private patient advocate. I decided that through my past experiences, I wanted to help people in my community receive the best care possible and learn to be their own best advocates. Medicine X embodies everything that I believe and I'm ecstatic to be part of the journey I hope to be able to collaborate with other like-minded people and learn as much as I can about new technologies. I look forward to discussing ways we can improve our health care, especially for our chronically ill patients. I'm extremely excited at the idea of learning all I can from professionals in the medical field and helping come up with new ideas to improve our healthcare. I have what is called left ventricular non-compaction cardiomyopathy. This is a disease of the heart muscle that is classified by deep trabeculations in the heart muscle. With LVNC I am at greater risk for developing blood clots, arrhythmia, and possibly heart failure. I had an ICD implanted 3 years ago, due to my high risk of a lethal arrhythmia (my mother and her father both died of this complication). I feel like the best patient is an informed patient. Hundreds of thousands of people have died or been seriously hurt because they blindly trusted their medical staff for the treatment of their conditions. They did not ask questions, have copies of their medical records, or know of the treatment options available to them. I believe that every patient should have easy access to their own health records and these should be electronically available at any time. I have gathered as many of my own medical records as I could and have created my own database of my own medical history. This database can pull simple chronological reports from a specific doctor or for all of my care as a whole. I do ask for printouts of my ICD data after each visit, but am disappointed that we don't have immediate access to this information. It is the patient’s heart, so why not give the patient access? I would love to figure out a way to use technology and give patients full access to their records, as well as allow other 25 health care providers to be able to acquire this data immediately as needed, while keeping the patient's information secure. admission charge for others is time and willingness to read. For myself, the cost is much greater, but so is the reward. Once, I was told that I helped motivate someone to become an organ donor. One organ donor can save up to eight lives. That person’s decision is real. The benefit is real. With myself as an organ donor, that makes sixteen lives. What a profound ability, to be able to give the gift of life. Giving a sense of hope, solace, reprieve and comfort is why I write about health. I write about my own health because I am nobody. In being nobody, I am everybody. If I have survived, carried on, pushed through, and moved forward, so can everyone else—including you. This connection is why I founded FMD Chat, which provides peer-to-peer support for those affected by fibromuscular dysplasia. My advocacy is not limited to the rare disease community. I am active in discussions about advance planning, palliative medicine, hospice, and end-of-life care as they relate across all age groups. Medicine X is, as its name implies, a crossroad of ideas—one of those ideas being including patients in medical conferences. Bringing patient voices into the discussion helps break the curse of knowledge that diminishes the ability of those entrenched in the medical field to think about health care from a less informed perspective and pushes us all to move beyond the functional fixedness that marks so much of the current health care system. My own involvement in Medicine X is focused on adding to and learning from the 26 A crossroads of ideas By Sarah Kucharski Since receiving my diagnosis of a rare type of vascular disease—intimal fibromuscular dysplasia—I have plunged headlong into social media based advocacy. Social media affords Sarah Kucharksi rare disease patients like me an opportunity to connect with other patients around the world and make friends who understand, often better than our own families, what it is like to live with our disease. I write because writing is the most efficient and effective way to reach into my soul, grab the slimy bits, pull them out, and put them on display. Why I want to put them on display is another question altogether. At times, I am lucky—what I pull out from my soul is a rough nugget of glimmering joy or a jagged ember of passion. Yes, these too must be extricated and catalogued, lest they take up too much room in an already full heart. By writing and sharing, I form tiny exhibits in a personal museum. The only collective creative idea pool, so that next year we may all find ourselves at an entirely new and exciting crossroads. 27 S ECTION 3 Presenter Track M OVIE 2.1 Sean Ahrens on peer-to-peer healthcare Crohn’s Disease and peer-to-peer health care By Sean Ahrens I was one of those kids that was sick a lot when I was growing up. I had asthma and ear infections; even before I had Crohn’s, my mom used to call me “The Trooper.” what the future would be and how my life, literally in a day, had completely changed. Because of that, I’ve become someone who lives in the present and tries to cherish everything that I have at any given time, because you never know when it’s going to be taken away. Any treatment for Crohn's colitis are all just treating the symptoms. They don’t know the cause of Crohn's colitis and as a result, the treatments generally suck. They are very expensive and have a whole host of side effects, plus serious risks that long-term use could pose, some greater than the disease itself. I’m very open-minded when it comes to the treatment options. I maintain a very restrictive diet that eliminates all grains and all refined sugars, called the “specific carbohydrate 28 Sean Ahrens At the age of 12 I got diagnosed with Crohn’s Disease. I lost 30 pounds in 30 days, and for a long time I felt very alone with the condition, like I was suffering in silence. After a barrage of tests, the doctors determined that it was Crohn’s disease. I remember sitting by the bedside there in the hospital and sharing tears with my mom over fears of diet.” I’ve been doing this diet for over a year now, and it has reduced my symptoms dramatically. Things like this diet are things you’re only going to find out when you start talking to other patients, so that was a big breakthrough for me. When I was at UC Berkeley, I ran into a bunch of other students who also had Crohn’s. It was this very exciting and empowering feeling that I got, once I started talking to all these others patients and started learning from all of them. You start to get this validation and realize, “I’m not weird and alone on this thing. There’s a bunch of other people out here who are going through the same thing.” It’s so comforting to have that feeling, but it’s also so empowering to start opening up these channels of information exchange that allow you to treat your disease better than you ever had before. We started getting together semi-regularly to brainstorm about ways that we could create solutions for other patients that have Crohn's colitis. Coming from my software background, I would come there with this software perspective—how can we build some sort of network so we could take these connections with each other and spread that out to the rest of the patients in the world. This actually became the catalyst in my head for building what I’ve been building now, which is called Crohnology. It is a network of patients across the globe that can share the treatments they’ve tried, so we can actually start to validate some of this information and validate some of these anecdotes that you hear about. Hopefully that can then inform science and real research to determine cures that we didn’t know were possible. My dream for the future of health care is one where every patient is networked to every other patient. Where they can track their health and share the treatments they’ve tried so that we can advance science more quickly, so we can discover cures that we never knew about, and so we can capitalize on the vast wealth of knowledge every patient has inside, and in turn, heal people. Crohnology is my shot at making that vision a reality. Access to data By Hugo Campos Everything for me changed that day. It was a sunny, muggy Saturday morning. I planned on taking BART into San Francisco to visit my parents. Hugo Campos I never made it. I ran up a flight of steps to catch the train. When I reached the platform, my heart beat faster - and continued to beat faster and faster, like it would never slow down, a runaway train inside my chest. 29 M OVIE 2.2 Hugo Campos on access to his own health data Now I have an implantable cardioverter defibrillator or ICD, a device that delivers a shock to my heart in case it goes into ventricular tachycardia or ventricular fibrillation - terms that are now part of my vernacular, although I now refer to them as VT and V-fib - the nicknames of enemies that cruelly, randomly sneak up on me. Before that day on the train platform, I knew little about the heart other than it having four chambers. But learning that I have a heart condition opened up a new world to me, and in order to navigate this new world and survive, I had to learn all I could about what made my heart tick so erratically. I realized I was going to faint. When I regained consciousness, I found myself lying on the cold concrete floor of the platform. My heart had taken off on its own, offering me a less-thanwarm welcome to the heart condition I never knew I had. I thought I was healthy, I exercised. Being at risk of having sudden cardiac arrest had never entered my mind, was never part of the plan. I endured a couple of misdiagnoses before getting to the bottom of what I really had: something called hypertrophic cardiomyopathy (HCM). More often than not, the first symptom of HCM is sudden cardiac arrest, death. Those kids you read about all too often that have collapsed on a soccer field, or a basketball court, and couldn’t be revived? I have the same condition. But I was lucky. This journey I never planned on taking inspired me to have educated conversations with my health care providers. I’ve learned that patients have to fully participate in their care if they want to be fully included in their care. This not only means asking the tough questions, but also demanding truthful answers. I strive to have full, unrestricted access to the raw data my ICD collects about my body - online and on my iPhone and iPad - so I can know as much about my heart as my device does. I need this total access to be empowered and to make decisions that impact my life. All too often, patients are not trusted to care for themselves. But we manage our careers, our finances, so why is it any different when it comes to our health? 30 The point is I want to be an expert when it comes to myself and my own condition. Nothing about me, without me … and so the journey continues. M OVIE 2.3 Britt J. Johnson on participatory medicine A life with Arthur By Britt J. Johnson At twenty-seven years old, I’ve raised a twenty year old. His name is Arthur, and he is autoimmune arthritis. In the middle of the night at age seven, I Britt Johnson awoke to wrists and ankles locked so tight that I crawled to my parent’s room for help. The following morning, as my dad held me in his arms, our family doctor gave him a look that simply said, “This isn’t good.” Doctor visit after doctor visit, we struggled to find an answer beyond, “temporary juvenile arthritis,” and we looked for a plan to get me better. My parents were accused of being hypochondriacs on my behalf; my grade school teachers thought I wanted attention. The attention I got was not the kind I wanted. Seeing “3 Ninjas” on a Friday night, my body became so stiff sitting through the movie that I limped out of the theatre. A man joked afterwards, “Did the ninjas get ya?” I can still see the look of guilt on his face as my mother explained that I had juvenile arthritis. Due to a lack of genetic findings, unremarkable x-rays, and inconclusive lab reports, for years no one believed or treated my pain, and I ultimately went fourteen years without a proper diagnosis or treatment plan. Having been hushed with anti-inflammatories and prescription painkillers in my teens, I felt crazy not having an answer to my ever-worsening pain. Searching for support and someone who would get it, my mom, ever the saint, discovered a website built by another young arthritic. It was there I found patients echoing my same complaints, providing resources and support. It was there I found my voice as an e-patient and refused to let Arthur rule my life. Quite the opposite: I was going to make him hold on for dear life. I never hesitate to be independent while dealing with chronic illness. If someone concerned for my health asks, “Are you 31 sure that’s such a good idea?” I am only more determined to prove them wrong. I’ve learned to ski and rock climb, am certified to guide whitewater rapids in the mountains of Montana, and know how to temper chocolate into some fiery confections. I shared this attitude with other arthritis patients on the weekends while volunteering with the Arthritis Foundation, but knew I wanted and needed to do more—specifically to bring much-needed attention to the other children and young adults living with arthritis. Drawing on the support of my online chronic friends, whom I became so close with that we exchange phone calls though have never met in person, I realized that more often than not I was now the one doling out advice to young adults recently diagnosed, or helping them search for answers like I had for so many years. I encouraged them to find the answers they needed, and shared my experience of finally flying out of state to be properly diagnosed at the age of 21. Finding a doctor that believed me allowed my voice as an epatient to grow. I felt validated in all of my years of online digging through research papers, attempting to self diagnose. Living with what I was told was psoriatic arthritis, I decided to once again grab life by the horns and started a blog, one that had a touch of sarcasm and just enough cussing to abate the pain. Growing an ever larger and more tight-knit autoimmune arthritis community, I’ve gotten to know the toughest group of people you’ll find. Social media has allowed me to interact with health care professionals through weekly planned chats and impromptu conversations covering a range of disease topics that you’d rarely see addressed in an exam room. Breaking down the barriers of who’s-who in the health care world, we’re able to have well rounded, albeit opinionated, conversations that I believe will ultimately bring about the right kind of health care reform and much-needed medical research to lead us to a cure. Currently, I am more appropriately diagnosed with spondyloarthropathy and rheumatoid arthritis, and suffer from chronic complex migraines. I am proud to represent these communities as a 2012 Stanford e-patient Scholar. Knowing my voice is heard puts a grin on my face that says, “Arthur, we’re coming for you.” Evolution through compassion, creativity, and knowledge By Karen Herzog The heart of health innovation is improving the health, well-being, and quality of life for patients and their families while streamlining costs, Karen Herzog creating organizational and staff efficiencies and effectiveness, and increasing access to care. Yet, the voice of the patient and 32 caregiver is often absent from professional health conferences. I have experiences as an e-patient caring for a child with a life-threatening condition, a health innovator of care communities, and a public heath advocate. I hope to further authentic and meaningful conversation, open up opportunities for collaboration, and spark innovation at Medicine X I hope to expand and deepen my perspectives and experience of participatory and collaborative medicine, social and gaming technologies for health and wellness, mobile health lifestyle, self-quantification and tracking, and new models for behavior change as they apply to and empower patient and familycentered care systems. The unique, personal story of my daughter Sophia has touched people and opened up conversations about the deeper meaning of health, wellness, and a life well lived. Stories like our family's shed light on how our health care system can evolve through compassion, creativity, and knowledge, to meet the needs of all of us. I am a social innovator who explores the nature of the glue that keeps communities together, productive, and alive. Built upon foundations in architecture, design, the web, marketing communications, integrative medicine, and business, I developed and managed a unique community of care for my daughter, Sophia, who lived with a rare genetic metabolic condition. Inspired by that extraordinary experience, I have since been dedicated to improving quality of life by catalyzing innovations and spearheading campaigns in education, the arts, technology, and health, especially for children and seniors. Moving the needle on health care By Dana Lewis Ten years ago, I didn't imagine I would be here. In fact, I hoped I wouldn't be here at all, because that would mean there was a cure for type 1 diabetes. When I was diagnosed three months Dana Lewis into my freshman year of high school, my first thought as it related to diabetes was that I didn't want anyone to know. I didn't want it to make me different. I wanted to be able to live my life without a medical condition, stereotypes, stigmas, and the psychosocial burden that also impacts my friends, family, and community. Ten years later, I'm still here. I have both type 1 diabetes and celiac disease. I've encountered numerous stereotypes about diabetes and a few stigmas in dealing with chronic diseases, but also have been fortunate to have stumbled my way into a powerful community of people just like me. And even better, people who are not like me but who are patients, advocates, caregivers, and just people who care. People like you. 33 Because I was diagnosed with diabetes in a geographic area that didn't provide many health care options, I also didn't know anyone else 'like me' in my daily life. This significantly shaped my perspective on diabetes and life as a patient. But now, living in Seattle, I am in a highly concentrated health care area with many providers and resources that aren't available to a lot of people. I now work within an incredible health system and understand a lot more about how health care operates compared to a typical patient. Having this perspective of health care adds to my patient perspective, which I think is much needed. Patients have stories to tell and solutions to propose and implement, but both patients and providers need be willing to sit down and engage in a dialogue together on the same level to find truly effective solutions. I am one of these patients, and I love being able to engage with just about anyone in health care to have these constructive dialogues. I hope to move the needle on whatever health care issue or problem we want to address. One of my favorite ways to do this is through #hcsm - the weekly healthcare communications & social media chat on Twitter, where people with varying perspectives in health care get together to debate, discuss, and dissect issues impacting our health care communities. One of the biggest issues I see recurring (and personally) is shared decision making—or a lack of patient-centered care. There's a huge gap between doctors and patients—not because we're sick, but because we're not trained to our roles. Providers go to school to learn their profession; we patients are just…stuck being patients, and usually without any prior training. We have to make the best of our situation, and we're reliant on providers to give us information, treatment, and hopefully a cure. Luckily, we now have access to tools like social media, which helps break down barriers and is a huge advantage to patients in health care. It's about bringing us to the table, enabling and empowering us to be a part of the solutions. E-patient: think globally, act locally By Donna Cryer As a blogger (DCpatient), a member of the Society for Participatory Medicine, chair of the board of the American Liver Foundation, and CEO of Donna Cryer CryerHealth, I communicate virtually and in-person with thousands of patients, patient advocates, and providers in disease states I am personally living with—ulcerative colitis, liver transplantation, infertility, autoimmune manifestations (arthritis, eczema)—and those I advise—cancer, kidney disease, and chronic wounds. I have been recognized by the FDA, ONC, and patient associations as a leader on the epatient space and take that role and commitment seriously to elevate the voice and perspective of patients throughout healthcare. 34 I want to immerse myself in innovative thinking and innovative people who are committed to transforming the role of patients in health and health care by changing thoughts, attitudes, technology, design, and systems. I want to learn about new approaches and new solutions to challenges of patients, caregivers, and providers, sharing with the many organizations and emerging companies with whom I interact. Of particular interest are strategies to encourage physician and health system adoption of new technologies and ways to link patient generated data and technologies to EMRs and the health system work stream. Each one of us can use our own self-care and educate our own physicians to create a ripple effect that changes the entire system. Consider how many providers and practices a complex patient interacts with. These are all opportunities to reform the system. By organizing your information and translating your story, you can redefine the patient-provider relationship. I’m interested in focusing on the solutions to health care problems, and this starts by thinking globally and acting locally. From patient to health care designer By Sherry Reynolds Like many e-patients, I have my own personal story that started even before I was born but rather than defining me it is what has given me the skills and Sherry Reynolds experience to not only participate in my health care but help to design and hopefully transform entire systems of health. My mom Carol, along with over 3 million other pregnant women, was given a medication–synthetic estrogen DES, during pregnancy, that resulted in a 40-fold increase in a very rare form of cancer in their daughters and other health affects in both the mothers and their unborn children. It was only discovered after a mom in Boston asked if the rare cancer in her daughter could be caused by the “medicine” she was given during her pregnancy. I was first evaluated for vaginal cancer at 13, told I probably couldn’t have kids at 25, watched my mom over-come breast cancer that metastasized to her liver in my late 30’s, had endless procedures and surgeries. I learned last year that my risk of breast cancer had doubled because of the DES exposure. Not content to be the passive recipient of care but needing the skills to be a co-creator, I majored in biomedical engineering, was a volunteer firefighter; and worked in an ER. I love 35 technology and when I graduated my first job was at Microsoft in the late 80s. I left to work in the AIDS community during the height of the crisis when two friends died. I started to develop my grassroots organizing skills and accidentally co-founded a union for temps in high-tech who lacked health insurance before becoming the state volunteer coordinator for a physician who ran for president and eventually ended up working in health informatics. When my mom’s cancer metastasized to her liver in 2002 we were spread across the country. As a family we blogged and researched treatment options that saved her life and I knew we had to change the system so everyone could have the same outcome as she did. In the past few years I worked at Group Health where we designed our system around the patient. I have been appointed to regional, state and national advisory boards and have been able to bring the patient voice into the wonky world of health IT. I stood up the National e-Health Collaborative; brought in people like e-Patient Dave and Regina Holiday and I co-created the first position for a patient/consumer advocate at HHS Office of the National Coordinator. I’ve been asked to speak at Brookings, Robert Wood Johnson Foundation and Office of the National Coordinator for Health Information Technology events on patient-centered design and innovation. I somehow ended up with over 5,000 twitter followers. A serial entrepreneur with a passion for social venture investing, this past spring I was asked to mentor the health care vertical at the Microsoft/TechStars accelerator. In June I was appointed to the new Health Information Management Systems Society’s eConnecting Consumer Committee. One of my goals for Medicine X is to share my vision of patients as key members of any care team. We don’t want to simply be seated at the table. We need to have a stake in helping to design the future of health care. When innovators hear powerful personal narratives and collaborate with patients we can transforming entire systems. One of the ways to sustain innovative change is to be part of a collaborative community that creates the space to be vulnerable, accepted, supported, and challenged. A creative place where we build relationships, take risks, collaborate across silos and disseminate best practices that we can take back out into the rest of our communities. Medicine X at Stanford is one of the crucibles for those of us in the nascent but growing eHealth community. What it means to be an e-patient By Alicia Staley There are many ways to describe yourself as an e-patient: empowered, engaged, electronic, effective, efficient. I've always felt the only way to describe myself as an e-patient is through my personal e-patient mission statement: 36 Alicia Staley "As an e-patient, I will work tirelessly to motivate, educate, and inspire others in the cancer communities to achieve their best health. By sharing my personal experiences with others facing a cancer diagnosis, I will do my best to improve their treatment and survivorship experiences. I will reach out to all cancer community partners, including health care providers, pharma companies, and medical institutions, to ensure everyone experiencing a life touched by cancer will always have the best resources and support available to them. Cancer can't beat a community!" Using this mission statement as a guide for my work, I know that I can be an empowered, engaged health activist working to make meaningful, lasting changes in the cancer community. By drawing on my social media skills, engineering background, and in-depth understanding of the patient experience, I work to be an effective and enthusiastic e-patient. Medicine X provides me with an opportunity to learn from the absolute best in the e-patient health care space. As a 20-year, three-time cancer survivor, I've worked very hard over the past few years to advance the patient experience in the field of oncology care. Cancer has a way of interrupting dreams and changing the course of a survivor's life. As an undergraduate studying mechanical engineering, I quickly learned that great amounts of determination and grit would be required to achieve my goal of completing my degree and beating cancer. That experience reinforced how fortunate I was to have an incredible support system of family and friends helping me along the way. I try to apply every lesson I've learned in my work to help others through the difficult journey of cancer treatment. I'm constantly looking for new ways to engage and inspire the cancer community as a patient blogger. I feel I'm on a path to help improve health care in America, and it has led me directly to this program. I know I'll learn additional skills and make new contacts at Medicine X, which will help further my dream of improving the patient experience for everyone dealing with cancer. Having the opportunity to sit next to fellow e-patients and health care professionals who are all working toward similar goals is a chance I couldn’t pass up. I would like to learn how to help engage and empower the remaining patients that need additional help or motivation to take this journey. E-patients are special people. By having the opportunity to work with other e-patients working in other disease states like diabetes and mental health, I feel we can begin to build a set of best practices or guidelines to help others take the steps towards becoming an e-patient. 37 S ECTION 4 Caregiver Duo Track best way of explaining to my friends and family what it was like was to write a blog. It was also a kind of therapy for me—I could be completely honest about things and also didn’t have to sit on the phone for hours repeating my daily activities. In truth the blog really only became interesting at the time I was called in for surgery. By that stage, the doctors knew that I was writing about my patient journey and knew I had also discovered the wonders of Twitter. What I didn’t realize was that my transplant team started to use my blog as a way of charting my progress and understanding what this whole process was actually like from the patient’s perspective. Specific bowel transplant groups didn’t exist and patient to patient interaction was fairly limited, so I decided that if I was really going to talk about things and use my own experiences for the benefit of others, I needed to broaden my reach a little. Crohn’s was the obvious place to start, and slowly but surely I began to engage with a group of patients around the world who were at all different stages on their own journey but appreciated talking to someone who had been through it all. Whilst having a bowel transplant was the extreme end of the spectrum, it meant that I had a great deal of practical knowledge that I could pass on to patients. I had experienced being a teenager, husband, and dad, and this was proving useful to other patients. I began to appreciate how valuable social media had become after downloading and reading countless documents. I began to teach myself how to navigate my way around social media 38 My road to becoming an e-patient By Michael Seres In late 2011, I became only the 11th person in the UK to have a bowel transplant at The Churchill Hospital in Oxford. It was the only option available to me, having had Crohn’s disease from Michael Seres the age of 12 and then intestinal failure. Unknown to me at the time, it was my journey towards transplant that started me on the road to becoming an e-patient. Like many other patients when they embark on a road towards the unknown, I was put in touch with another patient who had undergone a similar procedure about a year earlier. This proved a valuable resource because the surgery was relatively new and data was very sketchy. I decided that the and witnessed the positive impact it had on patients. The UK still has a great deal to learn from the USA about patient to patient interaction, but over the last year I have been able to grow my Twitter following, increase the profile of my blog, and have my blog syndicated on a number of sites internationally. This has led to creating small, helpful hints on video for patients and, to coincide with World IBD day, we created an online global community. We now have specific support groups online and within various UK hospitals. I now spend two or three hours a day mentoring and helping guide patients. The bowel transplant team at Oxford uses my experiences to talk to potential transplant patients, and I have become part of the executive committee at the Oxford Transplant Foundation. I am passionate about engaging with patients and helping others through their own difficulties. I recognize the growing importance of social media, and patient to patient interaction is without doubt going to play an increasingly important role in the future of health care. Becoming an epatient has literally changed my life, and now I hope that it can change others. I feel that I have only scratched the surface. I am starting to develop mobile apps, grow communities, and even develop products to improve the dignity for patients in similar positions to me. I know that despite all my work I am still a novice, and the chance to listen and engage with real experts will be the opportunity of a lifetime. Understanding the health care community By Anthony Galarza I have a lot of experience as a patient advocate. I have drawn an extensive knowledge of the medical world from an extended battle with childhood Anthony Galarza leukemia throughout the first 17 years of my life and used this knowledge to improve health care for others as best as I can. I have spoken at and participated in several high-level conferences in the Kaiser Permanente organization, as well as several other organizations, but I am currently seeking to reach a larger audience in a hope to influence not just the Kaiser community but the health care world as a whole. My mother, Diana Galarza, and I are a very experienced patient-caregiver duo and have participated in numerous high level conferences. Our experiences with cancer, which span my childhood to my adulthood and numerous organizations, have given us a very unique and broad perspective on the health care world. We have already used this experience to implement ongoing, positive changes in the Kaiser Permanente organization, and I believe that we can provide a unique perspective at the Medicine X conference. As a twenty-one year old college freshman—and frequent user of social media platforms—I am in a prime position to use technology to reach out to a large community, but have been 39 limited in my online success by a lack of guidance in the field. The Medicine X conference is an opportunity to learn how to successfully use these tools and engage the online community, both through discussion with others and the examples presented in the conference. Additionally, I believe that the Medicine X conference, as “a catalyst for new ideas about the future of medicine and health care”, will be very helpful in expanding my current advocacy skill set, not just in terms of technological prowess but also my ability to, “advance the practice of medicine, improve health, and empower patients to be active participants in their own care.” These factors–advancing medicine, improving health care, and especially empowering and involving patients in their own care–are already integral parts of my advocacy work, and I look forward to expanding my experience with them. The more aware and versatile I am in these fields, the better I can help the health care community around me. By attending Medicine X, I am not only improving myself, but also my community. 40 S ECTION 5 Engagement Track M OVIE 2.4 Liza Bernstein on peer-to-peer health care Breast cancer and peer-to-peer health care By Liza Bernstein In early 1994, when I was newly diagnosed with my first breast cancer, I was initiated as an epatient via a pre-internet social network—people connecting with phones. My oncologist put me in touch with a former patient and encouraged me to ask her about her story of surviving cancer. I’m certain she knew that this woman would not only inspire me, but also share tips and connect me to resources that would help me on my way…which, of course, she did. That’s how I discovered Harold Benjamin’s book “From Victim to Victor,” and the Liza Bernstein then quasi-revolutionary concept of “Patient Active.” This approach, which my oncologist and her former patient modeled, clicked for me, and thus began my e-patient journey. In October 2005, when I began the recovery process from my second breast cancer, I joined a support group moderated by my radiation oncologist and an oncology social worker. I discovered the power of sharing stories and information in a safe setting and found solace in my ability to help and inspire people by “just being there” as a 2x survivor. In December 2010, when I was recovering from 18 months of chemotherapy and surgery for my third breast cancer, I followed my curiosity about new research at the annual San Antonio Breast Cancer Symposium, explored their website, and found the event’s Twitter hashtag: #sabcs. 41 I read the feed until I saw a statement that intrigued me, at which point I jumped in and asked a question. Next thing I knew, a real person from a real, top-notch cancer center took the time to answer me, and my first (of what has now become many) real Twitter conversation about health care began. Here’s that seminal tweet (I’m @itsthebunk): danafarber: @itsthebunk 1) Fear/denial; some women feel they don't want to know. 2) The recent guideline changes make things less clear-cut. #sabcs 12/09/2010 Those three crucial experiences, plus many more, are what led me to become an informal patient advocate. I can’t tell you how many cancer patients I’ve helped since 1994, through an amazingly organic process. Someone refers a friend, someone asks a question in a support group, my oncologist asks if I don’t mind talking to a new patient… I’ve been through it all. Each of my cancers were primaries, each was caught early and treated aggressively. While utterly disrupting my life, each episode has also been an opportunity for knowledge and growth. I’ve refined my knowledge, learned new things about coping methods and how to really heal, and developed my own tricks of the trade. I’m deeply passionate about helping others become wellinformed, engaged patients, because I know one simple thing: getting a serious disease is terrible, but you have choices for dealing with it. If you can become a partner in your own care, your journey will be easier, you will be able to find grace and come to peace with agonizing decisions, you will meet some amazing people on the way, and you will discover how much inner strength you never knew you had. It is NOT your heart! By Carolyn Thomas Those are the exact words delivered to me by a man with the letters M.D. after his name—right before he sent me home from the E.R. in mid-heart attack, misdiagnosed as acid reflux. At Carolyn Thomas the time, I felt supremely embarrassed and apologetic for having made a big fuss over nothing, and for wasting his very valuable time. I learned much later (after somehow surviving that heart attack and finally being admitted to hospital for emergency procedures) that my experience is tragically common for women, even for those presenting with Hollywood heart attack symptoms like mine: crushing chest pain, nausea, sweating, and pain radiating down my left arm. I was shocked to learn that, compared to our male counterparts, female heart patients are not only under-diagnosed, but also undertreated even when appropriately diagnosed—and that this gender gap continues to widen. Why is this? How could this be? I needed to know. After returning home and feeling shocked, stunned, overwhelmed 42 and, yes, angry, I went online. I found the support community hosted by Inspire.com for WomenHeart: The National Coalition for Women with Heart Disease. From there, I quickly discovered a link to their Science & Leadership Symposium for female heart patients held at the Mayo Clinic each October. I applied—and was soon thrilled to become the first Canadian ever accepted to attend this prestigious and truly life-altering training program for survivors in 2008. Since returning from Mayo, I’ve become, as Kentucky cardiologist Dr. John Mandrola once described me, “…a heart attack survivor-turned-heart-health evangelist.” I’ve spoken to thousands of other women about our #1 killer: heart disease. But I’ve been able to reach far more than that through two blogs, including my award-winning site Heart Sisters, which now has well over half a million readers in 133 countries. I’m so excited to be one of the recipients of this year’s Alliance Health e-patient Scholarships. I am looking forward to learning as much as I can about the exciting future of patient engagement, and I can’t wait to meet other like-minded patients and Medicine X conference speakers! On patient safety and health care reform By Tim Gort In 2010, two of my three daughters experienced preventable medical errors at the same children’s hospital. My youngest daughter was born with high Tim Gort bilirubin, which required an exchange transfusion after ultraviolet lights didn’t slow the climbing levels in her bloodstream. However, because of an air embolism in one of the catheter lines, she suffered a cardiac arrest that required 45 minutes of cardiopulmonary resuscitation. Although revived, she suffered an anoxic brain injury. She turned two in February 2012, and has been diagnosed with cerebral palsy. She cannot walk, talk, or use her muscles in the same way as other children. The real challenge is that our nine-year-old daughter has severe cerebral palsy because of a twin pregnancy in which her sister passed away prior to birth. She also has had many health-related challenges in her short life. In November of 2010, she underwent a spinal fusion surgery at a children’s hospital. After her surgery, she was received a medication dosage five times her normal at-home dose. The result of the medication caused respiratory distress and a sleep study was performed. The results, which were skewed because of the over-dosing, 43 caused her to undergo tracheostomy that has since been reversed. Two children. One year. Two errors. One hospital. I must continue to believe and advocate within the confines of the health care systems that have failed me—not once but twice—because my children will require medical attention and therapies for the rest of their lives. I believe I can change this system. I share this story so that doctors, students, and all types of medical professionals can help change and challenge the existing culture that pervades in health care. Now is the time for transparency in all aspects of medicine. Now is the time to work together to remove the ethos of coverup and shame that’s rampant throughout hospitals and institutions across the nation. I believe my story and skills will help. Together, health care will be safer. It has to be. I write A Dad’s View, a health care advice column for the online news portal, Mlive.com, and the Grand Rapids Press. I’m also an author of a blog that documents my experiences fathering three children, two with cerebral palsy, and I regularly speak about special needs, health care advocacy and patient safety. Most recently, I’ve talked with medical students at the University of Michigan’s C.S. Mott Children’s Hospital and presented to clinicians at Mary Free Bed Rehabilitation Hospital, as well as students of Western Michigan University and Grand Valley State University’s occupational and physical therapy programs. Over the course of the past two years, I’ve become a patient safety advocate, attending conferences on healthcare reform, inter-professional education and practice, as well as patientcentered care and safety. Prior to working in health care, my professional experience includes more than fifteen years as a public relations practitioner and online marketer for several Fortune 500 companies and a world-leading financial services provider. In addition to being a professional writer and health care advocate, my job as a husband and father of three children is my top priority, and I pride myself on every accomplishment and failure as I continually learn what my wonderful family offers. Validation, wonderment, and making new friends By Steve Wilkins In 2011, I had the distinct honor and good fortune to be accepted as an epatient scholar to Med 2.0 held at Stanford School of Medicine. This year 44 Steve Wilkins I was invited to be part of Medicine X as an e-patient adviser. Medicine X promises to become an internationally recognized event due to the energy and leadership of its founder, Larry Chu, M.D. Like all of my fellow e-patient scholars, I have a story to tell. In my case, I have been a caregiver and pathfinder for my wife, who had been diagnosed with stage 4 non-small cell lung cancer. I have since gone on to counsel other cancer patients faced with this daunting diagnosis. I am happy to say that my wife and others are long term survivors, in part due to being able to navigate today’s heath care maze. My wife’s experience impressed upon me the importance of the patient (and caregivers) voice in health care reform. I tried blogging about cancer and survivorship for a while, but it was too emotionally tough for me. I eventually found my real calling researching, writing, and speaking about the need for better physician-patient communications in the doctor’s office and hospital. You may have seen my work on my blog Mind the Gap. I have also gone on to start a company in the patient engagement space. The thing I enjoyed the most from last year’s event was the amazing diversity of talented people, medical doctors, academicians, startup executives, patients, and students, all in the same room. What was even more amazing was that the attendees were genuinely interested in what we “e-patient scholars” had to say. This demonstrated to me the power and ability of storytelling to transcend the trappings of titles and the number of degrees one has. Medicine X will challenge you, inspire you, and afford you the chance to meet amazing people from all over the world. Take full advantage of the opportunities that will surely present themselves to explore new concepts, make new friends, and remind you that your work and voice have real value. Texting my pancreas By Kim Vlasnik Validation and encouragement between patients can be the bridge between feeling alone and feeling empowered. I have had type 1 diabetes for 26 years, and for the majority of Kim Vlasnik that time having diabetes was a lonely, isolating experience. Finding the online diabetes community has changed my life—not just alleviating the feeling of, “no one gets what this is like,” but introducing me to those shared experiences that give me courage, motivation, and desire to do my best when it comes to my own health management. I began writing a diabetes patient blog called Texting My Pancreas in 2010, and in 2011 I started a community-wide support project called You Can Do This. Patients and their 45 caregivers contribute user-made videos about their lives with diabetes: how they feel, where they struggle, and what they are able to achieve because and in spite of diabetes. We are validating for each other that the add-on experiences, such as complications, depression, and guilt, are manageable. Nothing about diabetes has to be the end of the road. “If they can do this, I can do this too.” Being able to provide hope and empowerment to other people with diabetes is what excites me, and it’s why I work so hard in the online community. Medicine X can help me find more ways to do that effectively. Sometimes the brain needs a nudge in order to come up with those “big ideas” that click— this conference sounds like the best kind of nudge out there. I want to learn as much as possible about how to do the best work I can for the diabetes and patient communities. I hope to make good connections and learn more about what is going on in medicine, both from the regulatory and government perspective, and learning about pharma, diseases, data, and other current approaches toward improving health and medicine. I am extremely passionate about making an impact in medicine, and want to meet other patients, physicians, innovators, and leaders that are as passionate as I am. Together, I believe we can make a positive difference. My work for medicine nonprofits and volunteer work for charities have given me a unique perspective on health and medicine. When not working for nonprofits, I work in health IT startup companies in areas ranging from data to genetic testing. I am also the executive producer for FutureMed at Singularity University—a 501c3 nonprofit that explores cutting-edge technology in health and medicine. Medicine X will help me learn and engage with more people in order to pass on information that will enable others to solve difficult challenges in health and medicine. On the cutting edge By Robin Farmanfarmaian I work in cutting-edge medicine for nonprofits and startup companies, and I am used to being on the front lines of health IT. I’m interested in helping other participants and getting them excited about using their knowledge and expertise to make a difference in medicine. Robin Farmanfarmaian 46 Connecting patients By Molly Reisman I was diagnosed with Crohn’s Disease in 2004. After five years of trying numerous medications with limited success and often intolerable side effects, I faced the prospect of biological Molly Reisman immuno-suppressive medications that seemed more frightening than my failing health. At that point I sought out other patients for advice and support. Through my search, I found support groups, programs, and Crohonology.com, a social health network for people with IBD (Inflammatory Bowel Disease—Crohn’s Disease and ulcerative colitis (UC))—all places where patients with IBD can connect with each other. Becoming part of a larger community where we share similar concerns and challenges has been nothing short of a miracle. As someone with a chronic disease, it has become increasingly clear that I cannot rely solely on my doctors to monitor my health or even respond to my health issues in the manner I would like. IBD is a complicated and poorly understood disease, and overworked medical professionals often fail to provide the level of care and support that they should—or at least that I want. As an e-patient, I realize I need to advocate for myself and have started to take more responsibility for my own health care, while at the same time I am able to provide resources and support to others. After a year and a half as a participant, I became the cofacilitator of a Crohn’s and Colitis Foundation of America support group. I am also actively involved in the Crohnology.com community where I work to support face-toface meet ups and further develop the network of patients using the site. I want to continue to contribute to my community and meet other engaged e-patients. I hope to learn what other epatients are doing, how we can better support each other, and how medicine is changing to accommodate the needs of patients who demand they be treated as individuals with unique needs. Not only am I committed to advocating for my own health and well-being, but I also believe that sharing my experience with others helps us all. By leveraging technologies and building communities, I feel that we, as patients, have the potential to diminish the burdens we bear while increasing our potential for health, healing, and happiness. While I have a lifetime of experience to draw on and a list of topics I want to address at Medicine X, I believe meeting with other e-patients and having the chance to learn more about the intersection of medicine and technology will provide me with fodder for my work and help me make better informed choices about what I want to do with my life. 47 Crohn’s disease does not define me, but it is a big part of my identity. By day I am also a program evaluator focusing on science education and informal learning. I hope to use my skills in program evaluation to demonstrate the potential of peer education and patient networks to improve health outcome, and I hope Medicine X will provide me with access to people and information that can help me decide if advocating for patients in a more formal way could be in my future. don’t exist. This creates a culture of fear for health care providers and an invisible line that many are rightfully afraid to cross. However, if a health care practitioner is unable to provide even one online recommendation to their patients, they are doing them a great disservice. Medicine X is providing e-patients the opportunity to stay on the cutting edge of technology and medicine with exposure to the futuristic visions of others. This platform is unique and unparalleled. Medicine is ultimately about the patient, and Stanford not only recognizes this, they have created a conference in which the patient voice is vital and included. Together we will collaborate, formulate, and celebrate ways to improve lives. I have personally been living a healthy lifestyle with type 1 diabetes for 28 years and rheumatoid arthritis for 10 years. After my daughter’s diagnosis with celiac disease and type 1 diabetes in 2007 at age five, a fire ignited inside me. I would no longer just think about the ways in which I could help others; I chose to become more actively engaged. The birth of Shesugar was in December 2011 and I haven’t looked back. My diabetes has carried me from South to North rims of the Grand Canyon, multiple marathons (some at high altitude), up rock faces, through love and childbirth, and on countless other adventures. I thank my diabetes for giving me this wonderful life I live. Diabetes has quietly influenced my food choices, love of exercise, and my sense of compassion for others living similar lives to my own. I try my best to throw 48 Social medicine and e-patient innovation By Jewels Doskicz, RN I am a health blogger, e-patient, and the creator of shesugar.com, where I write about healthy living with type 1 diabetes and celiac disease. My interests are in autoimmune Jewels Doskicz, RN disease, social media, and health care. In addition to Shesugar, I serve JDRF as a mentor, advocate, volunteer, and member of the online diabetes support team. My daughter and I both live healthfully with multiple autoimmune diseases. Health care and social media hold great interest and promise for providers and patients alike. Social media as a whole is underutilized by practitioners and hard fast rules for its use my arms around it, embrace it, and live healthfully with it. The mission of my blog is to provide a positive and practical educational link for families living with one or both diseases. I truly understand and have compassion for families managing the daily complexities of these diseases. My life experiences, along with my nursing career, have strongly impacted my passion, ideas, and motivations with epatient technologies. I have a unique looking glass of sorts into the daily life of chronic disease. I have realized the potential of social media and the hand it holds out to others afflicted with similar life circumstances. The practitioner’s office is merely a place where the journey begins; social media is the destination for many. I communicate with people from all over the world and provide access to them for everything related to diabetes and celiac disease. Practical information is so important and can be difficult to find with these diseases, especially when you have both. Many are unaware that one in ten people with type 1 diabetes also have celiac disease. Both diseases have a significant impact upon one another, upping the ante in their management. Patient-centric is about exploring ideas to optimize patient care in my eyes. As a nurse, I am a patient advocate. I am also invested in teaching patients how to advocate for themselves. What works well for one family may be a total bomb for another. A common disease may not present with common symptoms or have the same solutions as similar problems. It is important to realize that life with a chronic disease doesn’t follow a straight and narrow path. The twists and turns require constant shifts and adjustments. The relevance of making community connections, online connections, and finding a reliable stream of functional information cannot be discounted. The future of interactive medicine is in our hands, and I am excited for the opportunity to explore it together. Living with type 2 diabetes By Lizmari Collazo The future is now, and we must continuously brainstorm ways to reach patients, especially those who are being left out of their own care by traditional outreach methods. When Lizmari Collazo we embrace all persons in our health care communities, we can better mold the future of our own care, especially when the medical community is also encouraged to participate. We must engage what the future technologies have to offer in order to achieve this, especially for folks living with diabetes. I want to learn new and positive ways in which I can reach out to persons living with diabetes and instill in them a sense of 49 knowledge, hope, courage, and self confidence that they deserve. I hope to bring in a grain of understanding of what we, as persons living with a chronic health condition, need from our health care communities. I speak with raw honesty about the struggles of living with a condition that is terribly stigmatized, poorly understood, and subject to an awful lot of ignorance in the medical communities, as well as the mass information presented through the various media forums. I make no apologies about what it's like living with this disease, or the anger it might bring dealing with verbal abuse, or the discrimination in the health industry, and I strive to help type 2 diabetics better understand their disease in a way few others have attempted. My goal is for people to take a powerful hold of their realities, and not accept simplistic answers to their complex questions. I have engaged persons with diabetes in many positive ways: via a thriving group on Facebook, called "Living with Diabetes," which now has more than 500 members since it was started back in July of 2011; through a blog that now has a fan page with more than 120 fans, as well as more than 35 followers; and through various activities, such as the "Diabetic Ice cream Social," where we stood up against ignorance and stereotypes and reveled in the fact that we can thrive with diabetes. I also write for Diabetes1.org, with the blog "Musings for the Sweetly Bemused," and am a monthly contributor for the Blue Heel Society, an organization focused on bringing unity and attention to the diabetic community as a whole. Medicine X provides a unique opportunity to really engage the health community and learn how the future will help persons with a chronic condition. The new, emerging technologies bring hope to patients for better communication and understanding with their medical teams, as well as education and outreach to others who may be left in the dark by traditional methods of engagement. I hope to help break down the barriers to engagement and effective dissemination of information. Bridging the gap By Cherise Shockley I hope to share what I've learned, through the use of social media, about peer support and the importance of peer health. I am interested in hearing different perspectives on how others, Cherise Shockley namely physicians and patients, use social media to encourage, empower, and engage their peers. I’m interested and getting more health care providers involved in social media and moving them from “lurking” to engaging with patients. There is a gap between e-patients and 50 health care providers, and I’d like to help these groups partner and learn to use social media for peer support and patient empowerment. I am a person with diabetes. I thought I was alone until I stumbled across a diabetes online community, which changed my thoughts as a patient and a social media user. I have now become an e-patient, and I want to grow as an e-patient and empower others to use social media for peer support and patient empowerment. Through the use of social media and Diabetes Social Media Advocacy (DSMA) I was able to find an innovative way to connect people with diabetes from different parts of the United States, Canada, Europe and other parts of the globe. I want to use the information, experience and knowledge I have to engage the Medicine X audience and the entire world. I want everyone to understand the importance and value of combining health care, social media, e-patients, and peer health, all to improve patient empowerment. speak for several minutes. What followed from that point was an almost unimaginable multi-year nightmare, one which has been summarized by one person as my "suffering horrendous health problems, insults to (my) dignity, startling erosions of and betrayals in relationships, criminal malfeasance and neglect, etc." and by another as "one man's battle with (a rare disease), misdiagnoses, and mistreatment." I've documented and continue to document my story in a blog entitled, "My Real Life, Unnecessary Nightmare," and I've devoted part of the rest of my life's work to attempting to prevent others from having to experience the nightmare I experienced courtesy of the U.S. health care system. To date, this part of my work has largely been limited to writing and speaking about the experience and what about it needs to change and what others can do to facilitate that change. My lengthy piece entitled, "In need of transformation: the patient experience," has been called "required reading for all in the industry" by a leading e-patient advocate. My "A Call to Action Regarding Healthcare" has issued a challenge to the user experience design profession—my profession—to move beyond select behavioral tendencies so that they can play a larger role in achieving needed change. A companion presentation was made to members of the profession in April in San Francisco, and two related presentations are being scheduled for this fall elsewhere in the U.S.. A key to achieving needed transformation is understanding the socio-cultural models at play in the U.S. health care system. Such models have been the topic of outstanding talks 51 Being part of the solution By Richard Anderson While meeting with a business client of mine in January of 2009, I experienced my first seizure, a minor seizure causing my body to shudder and an inability to Richard Anderson at TED(x) conferences and at Medicine 2.0 '11. I have high hopes that more about these models will be addressed at Medicine X '12. One "new" model trying hard to be at play is peer-to-peer health care. Though increasingly acknowledged as vital to a fully-functional healthcare system, peer-to-peer healthcare has played a minimal role in my story. Identifying needed changes to enable it to have played a larger role are also among my interests. The National Organization for Rare Diseases sponsors a rare disease day campaign on the last day of February every year. In 2012, I became an active advocate for cryoglobulinemia via this campaign. Then I began to explore Twitter. I simply asked one question: ‘What is an e-patient?’ By the end of the day I was Skyping with a health care advocate and had secured a mentor. I found that Twitter was more than just chatting; it was sharing a wealth of information. The fire in me was fueled. Utilizing social media, I have been able to make global connections, support patients, build grassroots efforts, and contribute to the rare-disease community. I began to learn the language of the Internet and technology. I started researching how these tools could help me achieve my goals. I am an empowered patient, and I use all available venues to assist and direct other patients. I am on a mission to inter-weave the web: patient forums, Twitter, foundations and organizations, health information technology, and social media. My sales background taught me never to walk away until I received an absolute no. Armed with this philosophy, I began to knock on ‘virtual’ doors. I also walked through a brick and mortar door to attend Health Camp DC and The Walking Gallery. The wealth of information, education, and support available at the Medicine X conference will help me on my advocacy path. I look forward to learning and working with other e-patient advocates, rare disease communities, global communities, and participatory medical professionals. 52 I care because I’m rare By Marianne Vennitti Because of the isolation and fear that invaded my life when I was diagnosed with MEC in 2009 I started educating myself about rare diseases. In my greatest moments of despair, I made a Marianne Vennitti promise to myself that I would never let another person living with this disease feel lost and unsupported. Through networking on social media, the dream of a Facebook cryoglobulinemia vasculitis group is now a reality. When I am strong and able, I work diligently to bring support and awareness to cryoglobulinemia and to further build my network. Getting your message heard By Karen Curtiss As the founder of CampaignZERO I wear many hats, but first and foremost I consider myself an educator dedicated to health care literacy to improve patient safety. I wrote a hospital handbook (Safe & Sound in the Hospital: Must-Have Checklists and Tools for Your Loved One’s Care) that we try to get into as many patients’ hands as possible. We are also actively building a grassroots network of professional patient advocates to present our CampaignZERO Hospital Care Workshop in their local communities. So far, we have Chicago, Seattle, Phoenix, Tucson and Orlando covered…with lots more nooks and crannies to go! We are all about patient engagement, and Medicine X is sure to be a hotbed of others who are committed, passionate, outof-the box thinkers. I’ve learned that it's not good enough to have great online content if we don't have a great path to delivering it to patients—ideally, before a hospitalization, Though I believe we’ve developed excellent tools in our hospital handbook and workshop, we've invested a lot in the website and we're not doing a good enough job of leveraging social media to drive traffic to this free, invaluable resource. Building content and community networks come naturally to me, but at age 57, I'm behind the curve in leveraging modern communication strategies. I learn quickly and built our websites, so immersing myself in a culture like Medicine X will help me improve CampaignZERO’s communication strategy—and reach our goal to help zero out risks for suffering a Never Event among all 39 million hospital patients every year. And that's just in the US... why not global reach in every language? Karen Curtiss At CampaignZERO, we offer patients and their families a host of free, downloadable checklists they can use to help safeguard hospital care. All of our checklists are written at the 6th grade literacy level and targeted to family members who act as advocates for loved ones' care. Virtually all of us will be in the hospital at some point—or be called upon to stay with someone we love in the hospital—and we are all at risk for hospital-acquired conditions. One-third of all patients are accidentally harmed or killed by hospital care, yet relatively few are aware of even the most common, preventable hazards known as Never Events. Among those who are, trust in health care is replaced by fear. But neither blind trust nor fear advances safer, better hospital care. The CampaignZERO "way" is to inform in an inspiring, confidence-building manner, but we have a hard time getting people to our site before a problem in hospital care occurs. 53 Health communities are for everyone By Kerri MacKay As a young adult, to say that being diagnosed with an incurable disease in adolescence changed my world would be an understatement. However, in as Kerri MacKay many ways as having asthma has impacted my life negatively, it has shaped me as an individual in more ways positively than I could have ever imagined. Asthma and the connections I have made because of it motivated me to implement regular exercise as part of my “treatment”, and thus prompted a shift academically to the field of Kinesiology and Applied Health. Where the previous choices positively affected my physical health, interacting with others with asthma via social media helped with the emotional aspects of living with chronic disease. While I believe social media is an important part of building relationships, I think it is when we are face-to-face that we benefit at the highest level. I have benefitted greatly from connecting with other patients through social media, and hope that I can continue “the ripple effect” and engage with others to impact them positively. I’d like to learn better practices for engaging e-patients, specifically adolescents and young adults in the online community, and learn to better assess what these individuals need from the communities they are a part of. Sometimes, especially for young patients, there is not already a niche set up, and it is up to us to build one. Within my health advocacy circle, I take a slightly different position than those around me. I am currently 21 years old and have been a health advocate via social media since I was seventeen, shortly after being diagnosed with asthma. About six months after my diagnosis, I started the asthma blog "Hold your breath to breathe", which unintentionally became among the top asthma blogs (I had no idea people would even want to read it!) While the concept of this blog was fairly simple—typical adolescent stories while adjusting to life with a chronic disease that was difficult to manage on standard treatments—I found that by simply telling my stories, I connected with fairly prestigious bloggers in the small but tight-knit North American and international asthma communities. One blogger I connected with in particular, Stephen Gaudet of the blog Breathinstephen, has since become one of my closest online friends, mentors, and has helped shape my perceptions of living with asthma. I am also a co-administrator of one of the largest asthma communities on Facebook, the Severe Asthma Support Group, as well as the Breathinstephen Asthma Forums. I currently blog at Kerri on the Prairies about life with chronic illness as a university student, with a focus on owning chronic illness through physical activity and maintaining a positive perspective on the good that mixes in with the unpredictability of living as a young adult with chronic disease. As a young health advocate, I hope to connect with 54 other adolescent and young-adult health advocates. Often times our youth leads to underrepresentation in health care circles. I believe that interaction via social media can form relationships and set up foundations for networking, but I believe that face-to-face interaction can allow these relationships to flourish and benefit each party involved to a higher level, both academically and socially. physicians, hospital staff and patients to write a book on how to be an advocate for a hospitalized loved one. As Critical Conditions went to press in 2008, I was hospitalized for an emergency medical situation and spent four days in the hospital on a holiday weekend. I experienced many of the issues I wrote about in my book and enlisted my husband as my advocate. He was a great advocate! Six months into research and interviews for my newest book, The Take-Charge Patient, I developed a debilitating, chronic pain condition that lasted 16 months. Using every strategy in my new book, I became my own take-charge patient. I did credible research, followed the guidelines in my own book, collaborated with my physicians, and eventually, after 11 misdiagnoses, 15 procedures, tests and surgeries, and 22 medications, my research led me to my own diagnosis and the surgeon who cured me. I have been pain free for over a year. While at Medicine X, I look forward to learning more about the future of medicine and health care, the future of mobile health and telemedicine, and how these can improve patient care and patient education. I look forward to meeting others who are interested in the partnership of technology, medicine, and patient empowerment, and who are excited about the future of health care and medicine. I’ve learned the ropes as a chronic pain patient, hospitalized patient, advocate for others, researcher, and author. I lecture at health care organizations and to the community about patient empowerment, patient engagement, patient safety, the 55 Taking charge By Martine Ehrenclou My goal is to empower patients to become proactive and well-informed participants in their medical care. I’ve written two award-winning books, one about how to be an effective advocate Martine Ehrenclou for a hospitalized loved one and another about how to advocate for yourself to get the best medical care outside of the hospital. My experience as a patient and advocate for others began in 2001 when my mother and godmother were hospitalized for extended stays in different hospitals. I was surprised by what happened with their care and decided I had to do something about what I had witnessed. After interviewing over 50 families and discovering that their experiences with hospitalized loved ones were almost identical to mine, I then did hundreds of hours of research and interviewed over 175 partnership between patients and medical professionals, effective communication strategies, and other health/medical topics. I am constantly learning as an e-patient and am passionate about the exchange of ideas and new information. In August of 2012, I begin a program at UCLA to become certified in patient advocacy. Excited by learning and sharing new information, I continue to research, write and publish articles, write my blog, post on Facebook, Twitter, LinkedIn, and interact with others who are engaged in social media and are motivated to empower patients and their families. suffer from all the time and not just when out sick for the day or in the hospital. As a patient with several surgeries under my belt, I am concerned about how we will support those individuals with irreversible damage, even after cures are found. I am currently a full-time graphic designer and a part-time MBA student at the University of Mary Washington. I have always been fascinated with the idea that people with disabilities or other hardships can make great contributions to society, as seen in the case of designer and architect Michael Graves, who became paralyzed from the waist down and used his experiences to create useful products to assist others with disabilities. I’m grateful for the opportunity to attend this event and I’m excited to share my patient perspective with others. Sometimes the most meaningful learning experiences happen in the hallways between sessions, and I would love to meet people who are interested in improving health care. I look forward to bringing the experiences of others from my Crohn’s and colitis support group to the event, and then bring back my experiences to share with them. I was diagnosed with Crohn’s disease when I was in middle school and have been battling the disease, and sometimes the health care system, for over 15 years, including multiple surgeries and a considerable change in my quality and way of life. Approximately three years ago, I became co-facilitator of our local Crohn’s and Colitis Foundation support group (along 56 Designing health care By Carly Medosch As a person with Crohn’s disease and associated problems like short gut syndrome, post traumatic stress disorder, and anxiety, I am very interested in the future of medicine Carly Medosch and health care. I see a lot of doctors, take a lot of medicine, and deal with a lot of insurance billing issues. Through this process I have been learning how to advocate for my rights. I am constantly wondering why things don’t work more smoothly. I am interested in helping educate people about invisible illnesses and chronic illnesses, things that patients with my very supportive mother). I have always been interested in helping people, and it has been very fulfilling to be able to take my experience and turn it into a way to help others by providing them with information, support, and a safe place to voice their fears and questions. This year, I started a private Facebook group for members of the support group to bridge the gap between meetings, allow easy access to those who cannot often attend the meetings, and encourage friendships and outings outside of the meetings. I am very interested in health care advocacy and improving the lives of people with chronic illness. I think it is important that doctors and others in health care fields understand the patient’s perspective, going beyond just a good bedside manner and including the time constraints, financial burdens, and other hurdles facing patients today. I know there is a lot of room for improvement, and I am happy that people are out there working for a better future of health care. 57 C HAPTER 3 The Program At Medicine X, we envision an academic conference designed for everyone; where patients are in the audience, on the stage, and engaging with today’s thought leaders and innovators in emerging health care information technologies. S ECTION 1 Participating in the Audience resources to allocate 10% of the seats at Medicine X to epatient scholars. Our second goal was to define specific tracks within the scholarship program to target different goals and objectives of our e-patient scholars. We created a special scholarship track, called the engagement track, that specifically recruited epatients interested in engaging from the audience. The purpose of the engagement track is to provide an opportunity for e-patients to attend Stanford Medicine X and engage with the community, both at the conference and with the larger world, through social media. Besides providing a patient voice to the proceedings, scholars will help share and disseminate the knowledge they learn to further educate and inspire others. The spark of engagement begins at the front of the stage, and we have organized Medicine X to bring patients to the front and center of the discussion. All 35 of our e-patient scholars will be seated at the front of the auditorium where they can support each other and engage speakers and the audience from a position of prominence. By Larry Chu One of the founding missions of Medicine X is to create a patient-centered view of emerging technology and medicine. Our goal is to unite all health care stakeholders to work together and solve health care problems. As you might guess, patients are a core set of stakeholders. Yet they typically haven’t been meaningfully represented and engaged at academic medical conferences. We want to change that. Our first goal was to create a mechanism for patients to participate in Medicine X from the audience. We set an audacious goal of ensuring that at least 10% of the audience would consist of e-patients. To accomplish this goal, we created a scholarship program, in partnership with our friends at Alliance Health Networks, that would provide the 59 S ECTION 2 IDEO design challenge workshop Stafford sat down to meet with Dennis Boyle at Palo Alto’s storied design firm, IDEO. On topic: the medical conference—and how to do it better. Boyle, a founding team member of IDEO and a partner who helps to lead the firm’s health and wellness practice, spoke at last year’s Stanford Summit @ Medicine 2.0. This year he’s serving on the recently announced Medicine X advisory board, helping to craft not only conference content, but also its design. To this role he brings years of consulting and teaching experience, throughout which he’s advocated a human-centered design approach. When his firm was working with Procter & Gamble, for example, to craft the next generation of the Swiffer household mop, engineers camped out in Palo Alto homes to watch people clean their floors. When Air New Zealand asked IDEO to rethink the cabin environment onboard its long-haul flights, engineers spent a month in the North and South Islands first, taking time to understand the country’s culture. And when Boyle’s students in a design course at Stanford were tasked with tackling the nationwide explosion of Type-II diabetes, they left campus and crossed Freeway 101 to get to know real patients in East Palo Alto. Putting the patient at the center of medical innovation is a philosophy that’s perfectly in keeping with the thinking behind Medicine X, and it represents just one area in which IDEO is going to help expand and define the conference this year. We’re looking forward to building in greater 60 Bringing patients and all health care stakeholders closer to the design and innovation process is one of the overarching missions of Medicine X. We are proud to announce a collaboration with the world-renown design firm, IDEO. The IDEO design challenge workshop will bring together researchers, technologists, and health care professionals to work on a patient-centered design problem in order to understand the IDEO ideation and design process. The genesis of the project started with a visit to the storied design firm in November 21, 2011. By Julia James Wall-to-wall whiteboards; colorful Post-it Notes; squeaky markers; caffeinated beverages. These, of course, are the physical markers of The Brainstorm, and they surrounded the Medicine X team on Wednesday as Dr. Larry Chu and John interactivity at all levels of the conference and also to fostering more collaboration among our uniquely diverse attendant pool. Boyle’s guidance will be felt in other, more concrete, ways as well. Vague? That’s necessarily so; look for specifics in official announcements to come. As the Medicine X team left the ground floor of the Palo Alto firm on Wednesday to catch the fading sunlight, we turned our backs on a line of text that circled the walls of the room behind us. It was the law that governs IDEO’s brainstorming process: Defer judgment. Encourage wild ideas. Build on the ideas of others. Stay focused on topic. One conversation at a time. Be visual. Go for quantity. We’re looking forward to it. About the Program The Opportunity A “once-in-a-lifetime” chance to participate in a small group workshop to learn the IDEO design process from IDEO designers at their world headquarters in Palo Alto, California. The workshop will follow a patient-centered design approach. Overall Goal The goal of the Stanford Medicine X IDEO Design Challenge is to bring all stakeholders in improving health—researchers, technologists, healthcare providers, patients, and caretakers— closer to the design process in a space where they can share perspectives and work, interact, and collaborate together. IDEO designers will facilitate the workshop in partnership with faculty from the Stanford University School of Medicine. The goal of this process is not to generate a finished product per se; rather, it is to engage stakeholders in a design setting to solve a patient-centered health problem as a unified team, and to share their design and experience with attendees at Medicine X. It is meant to inspire collaboration and spark creativity among a diversity of thinkers, both Challenge participants and Medicine X audience members. We believe this to be at the core of what Medicine X seeks to achieve. We are proud to collaborate with IDEO to offer this incredibly unique opportunity to our attendees. Details Date of Workshop: Friday, September 28, 2012
Location: IDEO world headquarters, 100 Forrest Avenue, Palo Alto, California
Breakfast, lunch and coffee breaks included Description The Stanford Medicine X IDEO Design Challenge is a daylong workshop where attendees have the opportunity to work in small groups on patient-centered design projects with the goal of learning and implementing principles of design thinking. Prior to registration, e-patients will have the opportunity to apply for five available Design Track scholarship 61 opportunities. We will select five e-patients with experience in managing a chronic disease and who use technology to help facilitate their own care. Each scholarship awardee will become the focus of one of five teams engaged in the IDEO challenge, and each representing a different problem statement based on their chronic illness and application. Conference attendees will then have the opportunity to enroll in one of the five workshop teams of their choice on a firstcome first-serve basis beginning at the start of registration. A panel of judges will select a winner from the five teams based on creativity and specified selection criteria at the end of the workshop day. The winning team will have the opportunity to present its creative process, including problem statement and solution, to the audience at Stanford Medicine X. Schedule 8:30 9:00 9:30 10:30 11:00 11:30 12:00 12:30 2:00 Arrive at 100 Forest Avenue, Palo Alto: Breakfast and
coffee
Welcome, overview of the day, introductions and
homework discussion.
Tour of IDEO Palo Alto studios
Overview of design thinking process
Team assignments, assignment and discussion of
team projects and individual team formation
Individual teams break out with IDEO facilitators.
Working lunch in teams
Understand and observation in-context session
Downloading and synthesis session
3:00 4:00 5:00 6:30 Brainstorming & conceptualizing, prototyping &
testing session
Prepare design team project presentations
Individual design teams present to overall group
Wrap-up of the day and wine & cheese reception 62 S ECTION 3 On the stage and in the program patient-centered innovation of health care at the intersection of emerging technologies. About Michael Graves Michael Graves might be the only living architect with household-name status. But it was a teakettle, not his grand buildings, that etched his moniker into the popular consciousness. The Robert Schirmer Professor of Architecture (Emeritus) at Princeton University, Graves, 77, has been at the forefront of design for over 50 years. A highly respected architect with a broad portfolio of projects ranging from the Walt Disney Co. corporate headquarters in Burbank, Calif., to the Netherlands’ Ministry of Health, Welfare and Sport in The Hague, Graves, in 1985, put his mind to a smaller-scale task. His design of the stylish, utilitarian Alessi Teakettle foretold a high-profile future in the user-centered home design front. Today, the man is known to most Americans as the name on a line of innovative and practical products found on the shelves of retail giant Target. (His partnership with the company dates to 1999.) From an ice cream scoop to an ice bucket, the Michael Graves Design line incorporates sophisticated design principles into affordable, everyday household objects. In the wake of a 2003 viral infection that left him paralyzed from the chest down, Graves turned his attention to medical architecture and product design. Frustrated during his hospital stay by illogical layouts and sinks he couldn’t reach, 63 By Larry Chu Incorporating e-patients into the program and having them speak on the stage is another significant priority for Medicine X. From our keynotes to workshops, we have designed a patient-inclusive program that aims to engage and foster new linkages between patients and all health care stakeholders. Our opening keynote speaker–Michael Graves I am so pleased that the iconic American architect Michael Graves will give the opening keynote address at Stanford Medicine X on September 29, 2012. Paralyzed from the chest down due to a central nervous system infection in 2003, Graves has since used his design acumen to reshape the hospital experience by leading a functional and aesthetic transformation of hospital furnishings and equipment. I can’t think of a more fitting speaker to open a conference on Graves set out to rework the patient room experience, starting with tables and chairs designed so that they might actually serve their intended users–people who are often coping with limited mobility. The aesthetic and functional leap represented in his line is easily apparent to anyone who’s endured a recent hospital stay. What an impossible task to briefly cover everything Michael Graves is and has achieved. Just when you think you’ve hit the important identities–preeminent architect, designer, teacher– another one pops up. We’re thrilled that such a creative mind will be joining us at Medicine X 2012. e-Patient scholars speak from the main stage We are excited to present eight dynamic Stanford Medicine X | Alliance Health scholars on the main stage through a special presenter track. These e-patients will present petcha kucha talks on the e-patient experience from the Medicine X main stage over the course of the main 2-day conference, September 29-30, 2012. These talks will be presented prior to each core theme presentation. Artist-in-residence–Regina Holliday We are truly honored to be partnering with patient advocate and artist Regina Holliday as the 2012 Medicine X artist-inresidence. Regina not only created the artwork in this e-book, but she will be painting live from the Medicine X conference to document the conference experience through the narrative of her artwork. 64 C HAPTER 4 The Process The design process for the Medicine X epatient program was a collaboration with our e-patient advisory panel and leaders in the e-patient movement. The process included design, recruitment, selection, and mentorship of our 2012 e-patient scholars. S ECTION 1 Design share and disseminate the knowledge to educate and inspire others. Design track The purpose of the design track is to provide an opportunity for e-patients to serve as the inspiration and nexus of a patient-centered design project facilitated by the health and wellness team at IDEO. These individuals will help bring health care stakeholders closer to the design and innovation process by participating in a day-long workshop at the worldrenown design firm IDEO’s Palo Alto world headquarters. The design of our e-patient scholarship program was created in partnership with our e-patient advisory panel composed of Sean Ahrens, Hugo Campos, Sarah Kucharski, Steve Wilkins and Nick Dawson. I’m extremely grateful for their essential contributions to the design process that resulted in the 2012 e-patient program. Based on our discussions, we organized the program into four tracks of participation to engage patients based on their interests. These four tracks were: caregiver-duo, design, engagement, and presenter. Caregiver-patient duo track The purpose of the caregiver-patient track is to provide an opportunity for e-patients and their caregivers to attend Stanford Medicine X and engage with the community, providing unique perspectives of caregiving teams. Besides providing a shared caregiver-patient voice, scholars will help Engagement track The engagement track was created to provide an opportunity for e-patients to attend Stanford Medicine X and engage with the community, both at the conference, and with the larger world through social media. These e-patients will explore the role of emerging technologies and their impact on peer-topeer healthcare, patient-centered health outcomes, and empowering patients in participating in their own care. We aim for their presence in the audience at Medicine X to create new linkages between health care stakeholders to ignite a patient-centered innovation in health care. Presenter track The purpose of the presenter track is to provide an opportunity for e-patients to attend and speak at the Stanford Medicine X conference. These individuals will take the 66 Medicine X main stage and speak on issues important to the e-patient community including: • How do you consider yourself an e-patient? • What does it mean to you to be an empowered and engaged caregiver? • How do you participate in your own care? • As an e-patient, what hurdles have you encountered and how did you overcome them? By providing a patient voice to the proceedings, these epatient scholars will help share and disseminate the knowledge to educate and inspire others. 67 S ECTION 2 Recruitment significant barrier to application and attendance for many patients because health care costs consume a large portion of their income. With the help of the Kadry Foundation (Bloomfield Hills, Michigan), Medicine X was able to secure funding to assist patients with travel to the conference. After this program was announced, we observed an increase in the number of application submissions. The Stanford Medicine X | Alliance Health e-patient scholarship program was announced February 8, 2012. Online applications opened February 15, 2012 and closed on March 15, 2012. We received 80 applications. The program was announced through social media on the Stanford Medicine X blog and through Twitter using the #medX, #hcsm, #epatient, #hit, #hcsmSV, #quantifiedself hashtags. In partnership with Alliance Health Networks, we announced the program through messaging on their patient network websites including COPD Connect, Sleep Connect, Heart Connect and Arthritis Connect. During the recruitment process, we learned through online discussions that travel costs to the conference were a 68 S ECTION 3 Selection were removed). Advisory panel members could abstain from rating an application if they self-identified a conflict of interest in rating the application (e.g. recognizing an applicant based on the details of their patient story). Two raters reported six or more conflicts, two reported one conflict and one rater reported no conflicts. Applications were assigned an overall priority impact score from 0 (decline, without merit) to 10 (must absolutely accept). Individual applications were also scored on their appropriateness for selection in specific tracks from 0 (not appropriate) to 10 (most appropriate). Scores across all five raters were averaged. Applications were then selected based on highest overall priority impact score within each scholarship track. Results The disease condition profile of e-patient scholarship applications is presented in Interactive 3.1, and shows that diabetes and UC/Crohns were the two most prevalent disease conditions among our applicants, each accounting for about 17% of all applications. The least prevalent conditions were multiple sclerosis, asthma, and cystic fibrosis, each accounting for 2% of applications. The mean average overall priority impact score across all 80 applications was 6.6 (standard deviation 1.0), with the highest average score being 8.5 and the lowest average score being 3.8. 69 The selection process for our 2012 applicants was described by all members of our e-patient advisory panel as very difficult. Members described finding the stories very emotional, which increased the challenge of the evaluation process. One rater noted, “Doesn’t it make you want to fix everything?” Methods The selection process began with the creation of an online application designed to identify e-patients by their interests in specific scholarship tracks and provide them with an opportunity to supply information in support of their selection as a scholarship recipient. Applications were distributed to our e-patient advisory panel in a blinded fashion (names, photos, and contact information I MAGE 4.1 Condition profile of 2012 e-patient applicants The 2012 Stanford Medicine X | Alliance Health epatient scholarship application We are so excited that you are interested in applying for an ePatient scholarship to attend Stanford Medicine X in the Fall! If you haven't yet done so, please take a moment to review information about the scholarship program. Please note that this page may time-out (refresh) after a period of inactivity, causing you to lose any unsaved content. We recommend you type your application into a word processor and then cut and paste the text into the online form for submission. Applicant Information Condition profile of Stanford Medicine X | Alliance Health e-Patient scholarship applicants. Among the scholarship awardees, the mean average overall priority impact score was 7.4 (standard deviation 0.5), with the highest average score being 8.5 and the lowest average score being 6.8. Of the 35 awardees, 34 accepted their scholarship offer. One awardee did not respond to multiple notifications of their acceptance and an alternate awardee was offered the scholarship. We have reprinted the application below for your reference. Name Address Phone Email Photo Why do we need this? If you win a scholarship, we would like to recognize your accomplishment on our Medicine X website. By uploading your photo, you agree to give us permission to us it on our website. We will also need your photo to create an ID badge for the conference. Scholarship track preferences 70 Please indicate to which ePatient Scholarship Track(s) you wish to apply. You may apply to multiple tracks.* •Engagement •Patient-Caregiver Duo •Presenter •Design Please refer to the ePatient scholarship program page for more information about the different tracks. You may apply for more than one track, however scholarships will only be awarded in one track. Please tell us your interest in attending specific days of the conference* • I'm only interested in the workshop day, Friday Sept 28, 2012 • I'm only interested in attending the conference Saturday Sept 29-Sunday Sept 30, 2012 • I'm interested in attending all three days of Medicine X (Sept 28-30, 2012) General application questions Why do you want to come to Medicine X at Stanford?
What do you hope to learn by attending the conference?
Why do you believe you should be selected for a scholarship to attend Medicine X at Stanford? Engagement track questions Description: The purpose of the engagement track is to provide an opportunity for epatients to attend Stanford Medicine X and engage with the community, both at the conference, and with the larger world through social media. Besides providing a patient voice to the proceedings, scholars will help share and disseminate the knowledge they learn to further educate and inspire others. Selection Criteria: Successful applicants will demonstrate a history of patient engagement and community outreach and advocacy, with preference for individuals using emerging technologies such as blogs, Twitter, and social media to pursue these goals. Please tell us why you are interested in the engagement track and how you would use the scholarship opportunity to engage with the Medicine X audience and the world at large. Patient-Caregiver duo track questions Description: The purpose of the caregiver-patient track is to provide an opportunity for epatients and their caregivers to attend Stanford Medicine X and engage with the community, both at the conference, and with the larger world through social media. These duo teams will help provide a unique caregiver perspective to the Stanford Medicine X proceedings. 71 Besides providing a shared caregiver-patient voice, scholars will help share and disseminate the knowledge to educate and inspire others. Selection Criteria: Successful applicants will demonstrate a history of patient engagement and community outreach and advocacy, with preference for teams already using emerging technologies such as blogs, Twitter, and social media to pursue these goals. Successful teams will clearly articulate how they will bring unique experiences and perspectives to the conference. Please tell us why you are interested in the patient-caregiver duo track and how you would use the scholarship opportunity to bring the caregiver-patient perspective to the Medicine X community and world at large. Presenter track questions Description: The purpose of the presenter track is to provide an opportunity for epatients to attend and speak at the Stanford Medicine X conference. By providing a patient voice to the proceedings, scholars will help share and disseminate the knowledge to educate and inspire others. Selection Criteria: Applicants will be asked to submit a speaking proposal that describes their story and what they would like to speak about. Patient talks in the presenter track will be five minutes in length and follow a pecha kucha/ignite format. Applications will be considered for talks in the following topic areas: • On the ePatient: How do you consider yourself an epatient? • On Participtory Medicine: How do you participate in your own care? • On Problems and Hurdles: As an epatient, what hurdles have you encountered and how did you overcome them? • On Caregiving: What does it mean to you to be an empowered and engaged caregiver? • How does technology enable you to care for your loved one? Please describe the five minute talk you would like to give as an e-patient presenter on the Medicine X main stage. Please provide a summary or outline of your talk. Design track questions Description: The purpose of the design track is to provide an opportunity for e-patients to serve as the inspiration and nexus of a patient-centered design project facilitated by the health and wellness team at IDEO. Besides providing a patient voice to the proceedings, scholars will help share and disseminate the knowledge to educate and inspire others. Selection Criteria: We are interested in receiving applications from patients who are passionate about adding the patient voice to the process of solving health care problems. Patients should have experience in managing a chronic disease and use technology to help facilitate their own care. Successful applicants will be able to articulate why their 72 chronic medical problem needs thoughtful problem solvers and design thinkers to help improve their care. The successful applicant will then work with an IDEO designer to draft a problem statement that will become the focus of the Stanford Medicine X Design challenge. The winning team will have the opportunity to present their work from the Medicine X main stage. Please tell us about your chronic medical condition and how you have used technology to manage your help. Please discuss the problem statement you would have the IDEO designer and workshop team help you solve. How would various health care stakeholders (health care providers, researchers and technologists) help you solve this problem? Financial need These scholarships are intended for e-patient recipients with the greatest financial need. We ask that you please answer the following several questions regarding your financial need. (Partial scholarship rates would ask that you pay $60 for the workshop day, $139 for the Medicine X Conference and $199 for all three days of Medicine X). If we offer you a partial scholarship, would you be able to attend?* •Yes, I would be able to attend with a partial scholarship. •No, I wouldn't be able to attend. I need a full scholarship. Do you require assistance in paying for your travel to the conference site? The Kadry Foundation has provided limited funds to assist needy patients with travel costs. •Yes •No Are there any specific financial issues or barriers that you would like us to know as we take your request into consideration? Engagement questions Please use the space below to tell us a little about what you have done in the past that might be an example of engaging the community as an ePatient.* *We would like to be clear in our belief that everyone will be or has been a patient at some point in his/her life. However, the candidates that will be most successful in obtaining a scholarship will be the ePatients who are engaged in their community, for example, those that work with ePatient organizations or have shown in the past that they engage the public as ePatients through social media or blogging. Other considerations also include patients who have experience being empowered (usually by technology), equipped (by knowledge), engaged (in their care) and enabled (to care for himself or herself). Consent to contact 73 I agree to allow Medicine X to contact me by email about the conference. (We are a non-profit conference and may on rare occasion send information we think will be of interest to you on behalf of our partners) •Yes •No 74 S ECTION 4 Mentorship of the conference. One-on-one tutoring will be provided to epatients who are new to social media. Design track e-Patients in our design track will work with designers at IDEO to help develop their problem statements through sharing of their patient stories and innovation needs. These epatients will present their stories to the design teams on the day of the IDEO design challenge. They will work in partnership with these teams to ideate patient-centered solutions to their problems. Mentorship for our awardees is a significant part of our epatient program. We will provide mentorship based on each specific scholarship track. We will also convene an orientation session the evening prior to the conference to allow e-patient scholars to meet each other and the conference organizers. Caregiver and Engagement tracks Awardees in this track will receive pre-conference mentorship and information about what to expect from an academic medical conference and an orientation to methods of engagement at Medicine X. This will include a guide to the various roles of attendees at the conference including researchers, technologists, and health care providers, and ways patients can seek engagement with these constituents. A social media primer on communicating during the conference with Twitter and social media will also be provided in advance Presenter track Awardees in the presenter track will receive coaching and mentorship on the pecha kucha style of speaking in advance of the conference. Medicine X will provide speaking mentors experienced in public presentation to work with e-patient presenter track awardees before the conference. These mentors will work by telephone and Skype to provide advice and feedback on the development of e-patient talks. Presenter track awardees will also have the opportunity for a full dress rehearsal on the main Medicine X stage prior to their presentations. 75 C HAPTER 5 About the Artist When Regina Holliday was 37—working in her local toy store, teaching preschool art, and raising two young sons—her husband, Fred, got sick. Her journey through the health care system has led to a crusade as a health care advocate, artist, and hero to many. S ECTION 1 Painting the way to better healthcare M OVIE 5.1 Regina Holliday in the movie, 73 Cents. By Julia James
When Regina Holliday was 37—working in her local toy store, teaching preschool art and raising two young sons—her husband, Fred, got sick. The couple left their home in Washington, D.C., drove to a hospital in the suburbs, walked through a polished entryway and welcomed the care of medical professionals. But rather than encountering the smooth, modernized system she had envisioned, Regina found herself over the next three months struggling to navigate the complex, often rusty workings of a healthcare system playing catch-up. In an age of heightened customer service ideals and abundant, accessible electronic information, she battled to get face time with overtaxed medical personnel and to obtain her husband’s medical records. Feeling that she couldn’t know enough about his condition, she spent nights doing her own worried Trailer for the movie, 73 Cents, produced by Idolon films. research online. Tumors and growths in the abdomen: was he stage 2 or stage 3? “I just thought, ‘This is insane,’” she recalls. “In this day and age, this is the way we’re doing medicine.” Frustration for many of us slips away as we distract ourselves with new activities and interests. Regina’s, however, sprang from a simple question—In the age sophisticated computing, mobile devices and high-speed Internet, shouldn’t it be cheap and easy to access your own family’s medical records?—and it transformed one stressful night into an iron commitment: she’d challenge the system through art. 77 “I just started writing a letter to everyone we knew,” Regina recalls, “and I asked that anyone who had wall space please give it to me. And then I spammed a thousand people.” Her first big get was a local delicatessen, where she painted a 30-square-foot mural. Her next: a local gas station. Sometimes people would stop to offer donations; sometimes they’d stop to talk. And next to every painting was a placard with a link to a blog, which Regina started to populate with explanations, information and narratives about the anachronistic elements of the modern healthcare system. Eventually, she was asked to speak; next she was paid to speak. And then, in April of 2010, she found herself testifying before a subcommittee for meaningful use about why patients should have quick and easy access to their electronic medical records. Today, the rule is in effect in its incentive phase. Any facility interested in getting the money the legislation provides must grant a patient access to his medical record within three days of request. Three years ago, Regina was happy creating neighborhood public murals, of children reading books, and dinosaurs, and movie stars. Today she is a familiar presence as a patient-rights advocate and artist. She speaks nationally—about pursuing new health systems, better design and better ways of treating people—and creates on-site fine-art canvases, taking threads of conversation and weaving them together into their visual equivalent. She can also be found on the street, where she sets up shop, often in front of medical providers, with the intention of disturbing passersby—trying to get them to to change their expectations as patients and to become engaged in their own health. And she continues to create pieces for her walking gallery, a collection of 107 (and counting) jackets that capture the causes of the patients who wear them. “Stories are transformative when given to Regina,” writes Kait Bragdon-Roe, a patient-engagement champion who owns one of the jackets. “She paints our hearts, our tears, our failures and even an occasional triumph; and she always paints the truth.” Participants pay no money for the jackets but agree to wear them to medical conferences. The effect is a mobile gallery with a docent tethered to each piece of provocation. “Most of my art is a tiny little bit disturbing,” she says. “There’s something a little quirky-weird about it. And it tends to make people ask questions.” Regina’s husband moved through five facilities before he finally succumbed to kidney cancer, 11 weeks after first walking into the doctor’s office. But two-and-a-half years later, his wife’s passion is strong. “This is my life; I’m on a mission,” she says. “I’m very much at peace and free.” 78 S ECTION 2 The Monster, the Mythos and Medicine X I MAGE 5.1 Regina Holliday’s Medicine X. By Regina Holliday What does the television program Supernatural have in common with Stanford's Medicine X? That will take a bit of explaining… The world of the televised science fiction/horror serial is not so distant from the world of medicine. I find one often emulates the other and can often be analyzed using the same tools. When I am in a call focusing on the message of HIT, I remind folks to remember the metanarrative. Technology is not the most important part of our discussion. The overarching patient story must be considered equally significant. How do you explain story? I recommend using story itself. Back in 1993, The X-Files changed the world of the sci-fi narrative. Not only did it add valuable catch phrases to our Regina Holliday created this artwork as a narrative for the Stanford Medicine X conference. lexicon, such as “The Truth is Out There.” It set up a contentious dyad in the characters of FBI agents Fox Mulder and Dana Scully. Here, belief confronted skepticism on a weekly basis. In each episode, the characters would investigate an X-File: the odd, perhaps paranormal cases that filled the cold case files. These X-Files were beyond the normal range of FBI investigation and any agent who voluntarily studied them was considered suspect. 79 Each week the audience would watch Mulder believe and Scully attempt to debunk the cause of the X-file. They would confront human horrors, monsters, and aliens. This weekly dance of the macabre has a grand history in the televised narrative and is used in classics such as Star Trek and camp favorites like the Friday the 13th series. This convention is called “monster of the week” and does not require a continuous narrative. Often in “monster of the week” programming the shows could be watched in any order without causing the audience distress. But The X-Files show is about that which is beyond the normal, so this show embraced mythos. Above and beyond the weekly episode was a master narrative that was at first supported by the “monster of the week” device and then subsumed it. This show became completely mythos, focused toward its end as the characters were entwined within an epic conspiracy that involved covering up the truth. The X-Files opened the flood gates for a new kind of televised serial, and in 1997 Buffy the Vampire Slayer was first aired. Buffy was the dissertation topic of my late husband Fred Holliday, and he often marveled at the beautiful marriage of “monster of the week” and mythos within this program. It also had a healthy dollop of metanarrative, with characters using lines such as, “I can’t believe you, of all people, are trying to Scully me,” or “Dawn’s in trouble, must be Tuesday.” (Tuesday was the day the program was aired.) Buffy aired from 1997 to 2003 and astounded critics and fans alike with its well written dialogue and its mythos that spanned 7 seasons. During those years characters were allowed to grow and change. Buffy went from being a high school student, to college student, to college drop-out, to food service employee, all the while spending her nights saving the world. She was an every woman embracing all economic classes, and with the death of her mother she became the adoptive parent of her younger sister. Buffy died twice, only to return to deal with grief, addiction, and domestic abuse, in addition to the trials of leadership. Then, in 2003, Buffy left the airwaves. But, like The X-Files before her, she inspired other programs. In 2005 the BBC the creative team behind the reboot of Doctor Who would successfully pitch the return of this well loved franchise as a “Buffy” for the UK. Also in 2005 Supernatural débuted in the United States. In this program, like The X-Files, “monster of the week” was devoured by mythos. Supernatural begins with a tale of two brothers, Sam and Dean Winchester, who define themselves as “hunters” and their goal is to find their lost father and avenge the deaths of their loved ones at the hands of a demon. Along the path towards this goal they encounter various paranormal entities that they must overcome in order to help terrorized civilians. They are mission driven and in the cause of fighting for that which is good, they support themselves through credit card theft and card sharking. Saving the world rarely pays well. Now the worlds of television and medicine begin to collide. 80 I painted this painting as I listened to episodes of Supernatural streaming on Netflix. As I listened, I learned the protagonist Sam was attending Stanford. He was smart, handsome, and empathetic with strangers to the point of endangering his fellow hunters. He was also somewhat elite, fussy, and prone to emotional outbursts when things did not go his way. Dean, the other lead, liked heavy metal, drove a 1967 Chevy Impala, and took pride in his blue collar and beer tastes. In addition, Dean was loyal to the point of selfdestruction and refused to accept the concept of fate. All of these thoughts swirled in my mind like the spirals in this painting, as I painted “Medicine X.” In this painting, the tower and quad of Stanford define the piece. The sky behind roils with inky spiraling clouds. The time is now and health care in the United States is mired policy debates; while, like a beast of burden, the institutions of care limp forward toward an ever elusive goal. In the center of the painting is an ivory tower. It has entire sections sawed out and begins to resemble an electronic key. Here is the key to saving lives. As I am sure Dean Winchester would say to Sam, you must leave the tower to fight the monsters. So when you look at this tower, I want you to think of the silos that must open and the towers that must level so we can all communicate on common ground with provider, academic and patient. Also, as Buffy could tell you, there is only one key that opens a portal between worlds. That key is a life. In the foreground, two girls stand within rising water. They are patients in need of rescue from the coming flood. One girl turns her back to the viewer and holds a smart phone in her hand. The other girl looks out of the frame and a blue Twitter bird perches upon her finger. They look concerned but are not panicked, because they have the tools of mobile health and social media to help them. To the left of this piece, a series of people are pushing their rafts upon the rising water. Our blocks from the tower have become rafts to navigate the deluge. Here we have doctors, techs, academics, vendors, designers, and patients trying to find common ground. Each uses the pole in their hands to move forward in the water. As the pole crosses before their body each becomes the letter “X.” We are the X in Medicine X. We are the unknown part of the equation. We are the mysterious other that has not been applied to the solution. We are the files locked in a cabinet and dismissed as other or strange. We are the ever-arching story above and beyond the episode of care. Many institutions are treating their patients like a monster of the week, destroying the one-off disease and forgetting we are a reoccurring character within in our own lives. Data access and patient portals allows us to enter the land of mythos where a narrative lasts a lifetime. Some of us will go farther, gentle reader. We will journey into a world where incentives are not measured in dollars but in lives saved, where stones float and ivory towers work as keys 81 that let people in rather than keep them out. I look forward to seeing that place. I know many doors lead there and I think one door will open at Medicine X. I thank Larry Chu for designing a event that is patient inclusive, and I hope to see some of you there on September 28-30, 2012. 82 Join Medicine X We invite you to join Medicine X online or in person! Visit our website: http://medicinex.stanford.edu Join us in person at Medicine X Sept 28-30, 2012: Register online Join our mailing list to receive important program announcements. lxxxiii Postscript We hope you have enjoyed reading about the
Stanford Medicine X | Alliance Health e-Patient Scholarship program. If you run a conference and you like our ideas, please steal them!
If you would like advice on how to include e-patients in your
conference, please contact us. If you have ideas for improving our
e-patient program, please don’t be shy–contact us! Finally, if you can find the time and resources to come to Stanford
in the Fall to experience Medicine X for yourself, please consider
joining us! You can register on our website. Our conference mascot
and chief evangelist, Zoë (the Frenchie pictured above), will of course
be on hand to give you a warm welcome! lxxxiv How to contact us: telephone: 650-723-4671
email:
[email protected]
lxxxv