"Geography Should Not Be Destiny"

This week, I wrote about why I'm leaving the ER (for now) for public health: 

Why I Left the ER to Run Baltimore's Health Department

I also lay out my goals and vision in the Baltimore Sun:

Geography Should Not Be Destiny

I will be on this Blog infrequently from now on. Please follow us on our website and new blog, B'Healthy in B'More! And on Twitter @BMore_Healthy.

A New Year & New Adventures—A Farewell Message

Dear Readers,

I am writing to share some exciting news: this Thursday, January 15^th 2015, I will be joining the administration of Mayor Stephanie Rawlings-Blake as the Commissioner of Health in Baltimore City. In this role, I will be overseeing our agency of 1,100 strong to lead the activities of the Health Department, which include health promotion and disease prevention, aging and care services, environmental health, animal control, and food safety.

This is an amazing opportunity to serve and to combine my passion for community engagement, public health, and patient-centered care to help those who were most vulnerable. Baltimore faces many health disparities that are rooted in poverty, violence, and substance abuse—but it’s also a city with extremely committed civic and faith leaders, engaged community organizations, strong foundation presence, and the longest continuous-serving health department in the country that has an outstanding history of service and innovation.

My last couple of years at George Washington University have been fantastic. I’ve loved teaching residents and students and providing care in our ER; serving as Founding Director of Patient-Centered Care Research; leading a new collaboration between GW and Kaiser Permanente on social mission and health policy with my mentor Dr. Fitzhugh Mullan; and researching and speaking about paradigm changes in healthcare reform (including a talk on Who’s My Doctor and our transparency campaign that is now on TED.com). While I’m sad to leave my inspiring students and extraordinary colleagues, I am honored and humbled to be selected to this new role to fight for health equity and social justice.

Thank you for following this blog for the last two years and advancing our common vision that patients, families, and providers can work together to be empowered to better health. I will be continuing to comment on public health and healthcare transformation on my Twitter account @DrLeanaWen and Facebook site. We will also be featuring announcements and guest posts at the official Baltimore City Health Department Twitter @BMore_Healthy and BCHD Facebook page.

Ten years ago, I wrote an essay for The New York Times that began with a quote by the Reverend Dr. Martin Luther King, Jr., that injustice anywhere is a threat to justice everywhere. I end this blog (for now) with another quote by Dr. King, as it explains my core vision and drive: “Of all the forms of inequality, injustice in healthcare is the most shocking and most inhumane.”

Thank you for all that you have done and continue to do. Please join me in this next chapter to fight against injustice and to improve health and well-being.

Sincerely,

Leana Wen, M.D. M.Sc.

Life in an Urban ER

I wrote a piece for NPR about the patients we see in an urban ER, and how every day is a reminder that health doesn't exist in a vacuum.

 

Even in the time-limited setting of the ER, it's important for providers to understand where our patients live, work and play. It's these conversations that allow us to diagnose and treat the real causes of our patients' ills.

 

Why the ER Doctor Asks Patients What's Happening At Home

Thanks to everyone for reading, and in particular to the many people who pointed out the critical necessity of teamwork--with nurses, physician assistants, technicians, nurse practictioners, case managers, students, social workers, and many more. 

 

Indeed, it takes an entire team to provide true care. As people have commented on NPR's Facebook site, we in the ER rely on social workers--many of whom are overworked yet try so hard to help our patients. Whenever we as docs and nurses refer patients to social workers, they are always fantastic about helping us. It's critical for us frontline providers who see patients first to ask the tough questions and look beyond the "chief complaint" in order to know to involve the other members of our team.

 

I have been fortunate over the course of my training and career to learn from and work with many incredibly caring, highly compassionate, and superbly competent providers. It's also the community leaders and neighborhood organizations who provide care outside the walls of our institution, who are critical to the health of people. 

 

On this Thanksgiving weekend, I give them, and all of you, my unending gratitude and deep respect. Thank you.

On Caring for the Neglected 20%: People With Disabilities

In last month’s Health Affairs, I wrote a personal perspective about unequal treatment for patients with disabilities. Nearly 20% of the population in the U.S. have a disability; yet, teaching about care for people with disabilities is not a mandated part of the medical curriculum.

This is a deeply personal issue to me. As someone who grew up with a speech impediment, I am acutely aware of the prejudices and disparities that result from lack of knowledge.

I’m grateful to Health Affairs for publishing this article and producing the associated podcast. This has been nearly10 years in the making—thanks to my mentors and colleagues Dr. Fitzhugh Mullan and Dr. Audrey Young, among others, for encouraging me to write about my experiences. 

And I will be forever indebted to Professor Vivian Sisskin: a friend, mentor, supporter, cheerleader, and best speech therapist ever. This essay is dedicated to all those who are fighting to ensure equitable and accessible healthcare.

Link to Health Affairs article:

Condensed version in the Washington Post:

More on OpenNotes & Surprising Results of What Doctors Think

Recently, I wrote on NPR’s Shots Blog about the movement towards open medical records and the pioneering work of OpenNotes by Dr. Tom Delbanco and Jan Walker. Here’s an excellent RWJF podcast about why they decided getting health care providers to share their notes with patients, and where their work is headed next. 

Here’s a hint: what if the 3 million patients who now have access to their clinician’s notes could co-write notes with their providers?

I'll add another thought: what if we go beyond written medical records, and patients wish to have audio- or video-tapes of their doctors' visits?

Patient advocates have responded very positively to the OpenNotes concept. I was curious about what doctors think of it and other movements to transparency. Emily Peters from Doximity was kind enough to help me with an informal poll of Doximity users (doctors who register to be on their site). We asked 3 questions and asked doctors to use a 1-5 scale, 1 being not at all likely to 5 being very likely. We received 113 responses:

(Please note that I have no financial with Doximity, and this poll is not meant to be a scientific study.)

I’d love to know what you think about this. Do the data surprise you? What do you think about open medical records, and patient-initiated requests to audiotape/videotape their medical encounters?

Innovations in “Upstream” Care

My last blog was on how today’s medical system fails by not addressing the real needs of our patients and their communities. Here, I highlight three projects that take such an “upstream” approach to healthcare:

Doctors can give prescriptions for medications, but why not a prescription for healthy foods and safer housing? Health Leads employs young people (usually college graduates interested in careers in health) to be advocates who assist doctors in clinics and ERs in connecting patients with community resources. They help with everything from food assistance to job training to legal counseling. They help to “fill” the other prescriptions that people need to achieve better health.

Recognizing that black males have significant health disparities and that outreach and education must start in the community, Project Brotherhood was conceived from a simple idea: give patients free haircuts, and use barber shops as a place to screen and counsel on illnesses such as high blood pressure and STI prevention. Its model of multidisciplinary, culturally competent care incorporates other aspects of social support, including on fatherhood and job support.

 The New York Times just published a story about an “EMS Corps” in East Oakland that specifically recruits at-risk youth and train them to be emergency medical technicians. They provide mentorship for young men who come from backgrounds of poverty and violence, and train them to become professionals who will serve their communities. As the story cites, these men are taught that they aren’t the problem—they are the solution.

These are only some of the some of the many innovations occurring around the country. We need far more interventions that go beyond “band aid” care. In the words of public health doctor Rishi Manchanda (whose recent TED talk I highly recommend), we must change our entire approach to healthcare, away from simply treating the effects of illnesses to targeting interventions to where people live, work, and play—where health really begins.

Going Beyond “Band Aid” Care

When I was a medical student, I worked with an NGO in Rwanda to provide medical care to women with HIV. Nearly all had witnessed their family members murdered during the genocide, and many became afflicted with HIV as a result of rape. Our initial focus was on getting antiretroviral therapy to these women, but we quickly realized that while it was important for them to have access to medications, they couldn’t be healthy unless they also had enough food to eat. They couldn’t stay safe unless they had shelter. They couldn’t be well unless we addressed their psychological trauma.

As an emergency physician working in inner city ERs in St. Louis, Boston, and D.C., I see this same problem every day. My 8-year old patient, Kami, comes in wheezing and short of breath. She has asthma, and two years ago, she lost her inhaler. She and two brothers are staying with her mother’s cousin; lots of people smoke in the house; and she’s missed several days of school. I can give her a breathing treatment and prescribe an inhaler, but how do I help her achieve good health?

Over the last year, I’ve seen 19-year old Byron in the ER three times. The first time, he was stabbed on the arm. It was a superficial cut; he received some stitches. The second time, he got in a fight and broke his hand. I gave him a splint and sent him home. The third time, he was shot twice in the abdomen. I stabilized him and sent him to the operating room. I wonder when he will be back for another violent injury. Is there a better way to help him than to patch him up, piece by piece?

Then there’s Josephine, a 38-year old single mother of four. She was told four years ago that she has cervical cancer. Between her three part-time jobs and taking care of her children, she had no time to see a doctor. Her boss threatened to fire her if she left in the middle of the day. She tried to call a specialist, but they wouldn't take her insurance. By the time she comes to the ER, her cancer had spread to her intestines and her lung. We set her up for treatment, but what does it say about our society that her disease had to progress this far?

Our healthcare system is good at providing short-term fixes for problems. We pride ourselves in having the most advanced technologies in the world. We can provide this excellent care for the few hours the patient is with us in the ER, hospital, or clinic—but then the patient is on her own and back to the same problems, 24 hours a day, 365 days a year. Numerous studies have shown that it’s where we live, learn, work, and play that have a far greater impact on our well-being than the treatment delivered in a hospital.

I chose to be an emergency physician because I want to provide excellent care to everyone, regardless of ability to pay. We in the ER provide a necessary service, but it’s far from being sufficient. We need comprehensive strategies that promote health and target problems “upstream”. We need to recognize that health does not exist in a vacuum, that it is intimately tied to issues such as literacy, employment, transportation, crime, and poverty. An MRI here, a prescription there—these are Band-Aids, not lasting solutions. Our communities need innovative approaches to pressing issues like homelessness, drug addiction, obesity, and lack of mental health services.

The sage Dr. Patch Adams said that if we treat the disease, we lose; if we treat the patient, we win. To help the patient, we must also address the health of the community.

Over the next several blogs, I will be exploring interventions that show promise in addressing the needs of the patient and their community. I welcome your ideas and suggestions.

One ER Visit; Two Contrasting Stories

My latest NPR article was about conflicting accounts of the same ER visit. I presented the case of a man who came in with chest pain. He was deeply upset about his care, but the providers had a very different perspective.

Heart of the Matter: Treating the Disease Instead of the Person

I had no idea that that this article would draw so many comments (nearly 300,000 at last check). Scott Hensley, NPR’s Shots editor, posted a compilation of the comments, along with my remark:

"While I'm gratified that so many readers appreciate the time pressures of working in a busy ER, I am saddened by how many respondents accept that efficiency must come at the expense of humanity. Our health-care system needs to change to bridge the disconnect between what patients need and what hospitals do. All of us — as providers and patients —need to speak up, and demand a system that values both competence and compassion, and enables doctors to practice true patient-centered care."

I’d love to hear your thoughts. What can be done to improve our healthcare system?

The Effects of Obamacare

One of the most popular provisions in the Affordable Care Act (ACA) is that of allowing young adults to obtain healthcare through their parent’s policy until they are 26.

This week, my friend and colleague Dr. Kao-Ping Chua, a pediatrician and health policy researcher at Boston Children’s Hospital, published a research article in the Journal of the American Medical Association that shows young adults report improved health and lower out-of-pocket costs after implementation of Obamacare.

"I decided to do the study because young adults have had the highest rate of uninsurance in the United States, leading to poorer health and a higher risk of catastrophic health costs," Dr. Chua said in an interview.

As an emergency physician, I am delighted to see young people take advantage of this aspect of the ACA. I also look forward to more research findings on the impact of Obamacare on health costs and outcomes.

Help Your Doctor Help You

This week, I wrote an article in Slate with the provocative theme of "10 Types of ER Patients". 

My intention in writing the article is not to stereotype or imply that patients don't have good reasons for coming to the ER. 

Rather, in my work as an emergency physician and separately as a patient advocate, I've met many patients who are frustrated by their care. I've seen the same missed opportunities and miscommunication happen over and over. This is my attempt to provide advice and guidance before they came to the ER.

The 10 Types of Patients I See in My Emergency Room

What do you think? Is this advice helpful? I'd love to hear your thoughts.

ER Doctor = Detective

Being an emergency physician is an honor and a privilege.

Along with primary care physicians, we ER docs are the frontlines of medical care. We have to be able to take of every patient, no matter their age or ailment (or, thankfully, their ability to pay).

Our job is often very challenging because we have to make decisions with little information. It's often easier to second-guess decisions we made, because the answer is always clearer in retrospect.

My latest NPR article discusses the challenge of being an ER doc and practicing medicine in a fragmented medical system.

When Facts Are Scarce, ER Doctor Turns Detective to Decide on Care

Please read, and comment! I'd love to hear your thoughts.

What Can China’s Healthcare Dystopia Teach the U.S. About Our Future?

What does a healthcare dystopia look like?

In my recent TED talk, I introduce you to a world where people die waiting for healthcare, where corporate interests reign, and where doctors get paid to do more rather than to the right thing.

I’m a Chinese-born, American-trained physician. A couple of years ago, I was given an opportunity to conduct a research project on China’s healthcare system. I traveled to 15 cities from Beijing to Inner Mongolia, visited over 50 hospitals, and had unprecedented access to doctors, medical students, nurses, administrators, and government officials. Given how China’s developed into a major world power, I expected to find a fair, functional system.

However, instead of this utopia, I found a dystopic world. People spoke about the 1980s, when universal healthcare was dismantled, and 900 million people lost coverage overnight. Everyone had a story of friends and family who died in front of hospitals because they couldn’t pay.

Doctors were unhappy too. Imagine you’re a doctor, and you trained all your life to listen and heal; suddenly, overnight, you’re a businessman and you have to work your patient to get every cent.

On the other hand, if you’re a well-off patient and you hear that poor people get denied services, what do you want for yourself? You want everything to be done. Because you have the money, nobody will tell you about the risk of radiation of a CT scan. Same for expensive but untested medications, or potentially dangerous procedures. People got what they wanted, but at what cost?

No doubt, China has been very successful. The government has lifted millions out of poverty. But there is a fundamental problem, a blind spot that’s been missed in the rush towards economic reform.

This blind spot is our belief that being a consumer enables choice, and that choice is power. I’m all for empowering people to have choices. But turning patients into consumers means that healthcare is a commodity, not a right. It becomes possible to deny life-saving treatment, and to sell unnecessary, even harmful, interventions. The doctor-patient relationship becomes a transaction between salesman and client.

That blind spot, and the consequences, are not unique to China. Here in the U.S., costs of healthcare are escalating out of control. While millions remain uninsured, 30% of all tests and treatments are done are unnecessary. It’s far more profitable to peddle drugs than prevent illnesses. According to the New England Journal of Medicine, 94% of doctors have some affiliation with drug and medical device companies.

By no means am I romanticizing the pre-1980s Communist state. My family left on political asylum, and I am very grateful for the opportunities afforded to me by my adopted country. But capitalism doesn’t have to equate consumerism, and the beauty of a democracy is that we as citizens can decide what type of society we want to live in.

To prevent further problems in our country, and to stop the rest of the world from following us down this path, we have to make a difficult decision. We must decide if it’s important to us to preserve our core tenets of liberty, democracy, equity, and justice. If not, we know what the dystopic future will look like. If so, the time is now to decide that there are some things that are not for sale, and that we must realign incentives to help people be their best selves.

What I Learned—1 Year After When Doctors Don’t Listen

One year ago today, my book, When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests, was published. My goal in this last year has been to travel around the country and talk about the book and its message of advocating to improve your health. I planned a 48-city itinerary where I’d crisscross the U.S. from Massachusetts to California and back. I’d speak at bookstores, libraries, nursing homes, universities, and community centers.

What I didn’t anticipate was that this “speaking tour” would turn into a “listening tour”. 

From Boston to Los Angeles to Lexington to Cincinnati, people told me about their experiences with healthcare. Some, like 62-year old Annie from San Francisco, thought of themselves to be “e-patients”, or empowered patients. “I have a rare rheumatological illness that very few doctors have encountered,” she told me. “I bring research articles and educate my doctors.”

Others avoid doctors, like Janet, a 48-year woman from St. Louis who believes in “prevention, prevention, and prevention.” However, like many others I met, she sees healthcare providers nearly every week because she’s a caregiver to her elderly parents and her three children.

Over 2,000 people shared with me their frustrations with doctors, insurance companies, hospitals, and the healthcare system. I listened and learned.

Here are 10 themes that emerged: 

People don’t know that they have options, especially when it comes to saying no. They are used to doctors telling them what they need; they are surprised when I mentioned that patients always have a choice to NOT get a test or NOT take medications. Few interventions are so emergent that patients need to obtain them immediately. Watching and waiting, discussing it further with the doctor, and obtaining a second opinion are reasonable alternative. 

People want to please their doctors. In general, people like their doctors. Many feel they have to do what the doctor wants out of fear of displeasing them. “I lie and say I take medications I can’t afford,” 75-year Tony from San Antonio said. Others expressed their need for doctors to support their decisions. “Give me real choices and mean it,” says 38-year old Teresa. “Don’t judge me as being noncompliant just because I have a different value system.” 

People don’t want more care—they want right care. People recognize the harms of overtesting and overtreatment, and know that more care isn’t always better. They know to be wary of industries with ulterior motives. “Drug companies and insurance companies aren’t operating out of the goodness of their hearts,” says Joseph, a 55-year from Providence. “There’s a lot of money to be made money from healthcare.” They also fear rationing, and caution that less isn’t more either. What they want is the right care, without personal or commercial interests getting in the way. 

People don’t expect perfection, but they demand transparency. They know that doctors aren’t omniscient; they just want them to share what they know. Uncertainty is fine, as long as they are told the truth. Also, people accept that doctors are human and that medical errors occur. They don’t aim for retribution, but they do want disclosure of the mistake and to know that the doctor is committed to addressing it. 

People want more information to choose doctors and hospitals. “It’s disgraceful that I can find all types of information on choosing a coffee shop but I know next to nothing about my doctor,” 35-year old Jenny from Cincinnati says. People want to know about their doctors, not only their credentials, but also any financial conflicts of interests, their values, and who they are. 

People know that hospitals aren’t hotels. They don’t expect valet parking and 3-course meals, but they do want to be treated with respect. If they’re cold, they want a blanket. If they’re thirsty, they want some water. Without compassion and addressing basic human needs, marble staircases and fancy MRIs are worthless. The same goes for doctors’ offices. Forget the fancy carpeting, but find staff who treat people with humanity and dignity. 

People will wait if they get what they need. The dogma based on patient satisfaction survey results is that higher wait times leads to unhappy patients. However, the people I spoke with are unhappy not because they had to wait, but because they did not get what they expected despite the wait. “I waited two hours, and the doctor just spent five minutes with me,” said 49-year Sophie from Plymouth. Studies show that patients are interrupted in about 12 seconds; it’s no wonder people feel ignored and not listened to! 

People aren’t lazy when it comes to their health, and don’t always want the quick fix. Most people don’t want to go to their doctor at all, and prefer to find ways to improve their lifestyle and prevent disease. The popularity of diet and fitness books is case in point. Many do not want “the easy way out” in the form of drugs or surgery, but would rather discuss fitness, diet, and use of alternative therapies with their doctor. “It’s my doctor who doesn’t want to discuss these therapies with me,” says 22-year old Sandra.

With Dr. Jocelyn Elders and advocate Patty Skolnik

People know that the current system is unsustainable. No matter the politics, people saw the healthcare system as being broken, and all of them as victims—and future change agents. “It’s just like the environment: there are finite resources,” I heard over and over. Since “free” and “cheap” weren’t synonymous with good care, people are willing to pay out of pocket for better value (as long as it doesn’t bankrupt their family). They are willing to share in the cost to society, because they recognize they already are.

People crave connection and caring. They want face-to-face interaction with “their” doctor. They want to be listened to and heard. Knowing their medical history is only the start; they also want their doctors to understand and connect with them emotionally, physically, and spiritually. This requires a sustained relationship; people do not want to go to “minute clinics” or use smartphone apps to access their doctor, but rather long for a long-standing relationship with an accessible, trustworthy provider.

By no means is this list meant to be exhaustive or intended to represent every one of the individuals I met. The very nature of healthcare is that it is personal and individual. These findings represent the thoughts and wishes of a broad spectrum of people across the U.S. They challenge conventional wisdom when it comes to what is needed in healthcare. For example, the rise of urgent-care centers and smartphone apps should be seen as failure, not progress. Similarly, reducing wait times or adding fancy office furniture is not the fix for patient dissatisfaction.

Reform proposals tend to target policy changes that become mired in rhetoric and statistics. What people want is more basic, and more achievable. Doctors need to be transparency and honest with patients. They need to move away sick care towards healthcare. 

In the words of the great humanist and cardiologist Dr. Bernard Lown, we need to “do as much as possible for the patient, as little as possible to the patient.” Medical students need to learn shared decision-making and integrated care. Patients—people—should be part of every healthcare debate. Ultimately, we must restore medicine to being a caring partnership that prioritizes basic human dignity and respect. 

My listening tour continues. Please share your thoughts below. I look forward to listening and learning.

What Do Patients Think About Transparency?

Since launch of “Who’s My Doctor” two weeks ago and my blogs in Huffington Post, British Medical Journal, and Psychology Today, I have had a number of queries. Many people want to know what is the reception to it so far. My next blog will address what doctors think about the total transparency initiative. This post focuses on our patients.

Here is what prominent patient advocates have said about this campaign:

Patients and families increasingly understand that health care varies. They want to know about the training, experience and ultimately the quality and outcomes of the doctor's they choose. "Who's My Doctor" and the "Total Transparency Manifesto" are wonderful first steps towards this goal.

--Carol Cronin, Executive Director, Informed Patient Institute

We have a transparency law in Colorado and the intent of the law is for consumers to have access to information about their physicians including conflict of interests so they can make more informed decisions. There is complete transparency regarding all 49 professions under DORA. What Dr. Wen is proposing is just this without having to pass legislation to make it a reality. Bringing to light vital physician information should be a given. Physicians should not allow a conflict of interest to influence their medical judgment. It is a human factor that it does so why not eliminate the temptation. All health professionals have a responsibility to their patients as well as to themselves.
--Patty Skolnik, Executive Director, Citizens for Patient Safety

Trust is vital for relationships. Patients place their trust in their physicians.  We trust the information our clinicians share with us will be free of error, bias and self-interest. Medical journals require disclosure statements and I believe the same standard of transparency must also be provided for patients. Leonard Kish reminds us “data enables decisions.” “Who’s My Doctor?” ensures patients receive the necessary information needed to make informed decisions that impact our health. I support Dr. Wen in her efforts to provide further transparency for patients. I’m passionately supportive of this movement and as a patient advocate have seen the need for this culture change for a long time.

--Lisa Fields, patient advocate and Co-Founder, Healthcare Leader Tweet Chat

Restoring integrity to medicine is a very important project, and I salute Dr. Wen for taking the initiative to start “Who’s My Doctor”. In the 21st century informed patients want to know -- and deserve to know -- if their doctors have any potential conflicts of interest. Commercial values pollute too much medical science and clinical care, but many doctors are independent and put integrity and professional values first. They will be proud to share their information on this website and it can become an important resource.

--Leonore Tiefer, PhD, Co-organizer, Selling Sickness; Convenor, New View Campaign

“Who’s my Doctor” is an innovative campaign that supports providers who want to demonstrate their commitment to integrity and ethics in all patient interactions. The public needs to know that the health care providers they entrust with their lives are free from personal bias and professional conflicts of interest. To date, finding this level of transparency about our providers has been close to impossible. “Who’s my Doctor” is a way for providers to be proactive about the information they share with patients and supportive of patient choices that originate from a foundation of mutual respect and trust.

--Julia Hallisy, D.D.S., Founder, The Empowered Patient Coalition

In the ER, my patients have responded positively to my disclosure. “I had no idea doctors get paid to do more,” some said, while others were surprised: “I thought all doctors got paid by drug companies.” Nobody has said, I wish you didn’t tell me, or why are you explaining this to me. The other doctors who are joining this inaugural campaign report similar anecdotes; you will be hearing their voices on this blog in the coming months.

I’d love to know what you think. Would you use “Who’s My Doctor”? What do you want to know about your doctor?

“Patients at Front and Center” & Other Dispatches From Stanford Medicine X #MedX

I have a confession: I was anxious about attending this week’s Stanford Medicine X conference. While I’m hardly anti-science, I advocate for the return of listening and a refocusing on the art of medicine. I write regularly about the low-tech revolution to healthcare reform—and here I was about to speak at a conference that’s “the intersection of medicine and technology".

My fears turned out to be unfounded. Rather than being a tech-fest, Medicine X sets itself apart from all the hundreds of medical conferences I’ve attended because patients are front and center. Patients formed the advisory panel; patients presented during every session; and, in fact, patients were the VIPs seated prominently at the front of the room. As multiple attendees noted, when there was a question, everyone turned to the patient—not the physician—for the answer.

Halfway through the conference, I had a realization: isn’t this how every medical conference should be? In fact, isn’t this how medicine is supposed to be, with the patient as an integral partner—and driver—of healthcare?

The three days of Medicine X were filled with dramatic examples of this. E-patient and cancer survival Liza Bernstein discussed the importance of dignity in healthcare: “It’s invisible, but just as important to us as oxygen.” Marble staircases and fancy furniture can’t make a good healthcare experience if respect and empathy are missing. “No matter how dire things are, you can’t let your dignity be taken away,” she urged.

Sam Gordon, an e-patient with terminal pancreatic cancer, shared his goals in health. “When the outcome is known, when curing isn’t possible, doctors have to heal,” he said. “My doctors are comfortable with ‘scientific time’, but how about let’s talk about my pain?”

There were many poignant moments when people shared their stories. They are reminders that in the often-sterile and detached environment of healthcare, it’s OK to show emotion. Emotion allows us to bond. Designer Amy Cueva contends that emotional intensity can be indicators of unmet need. “You must pay attention to pain, frustration, and anger,” she said. Our responses to the many authentic, emotional voices are testament to the critical importance of the story.

Both patient and providers discussed how the root of so many problems is miscommunication and lack of understanding. Stories help us connect, inspire, and heal, and Medicine X provided the venue to share our stories. It offered the space for disparate groups to break down our silos and work towards a mutual understanding.

Towards the end of the final day, I had another realization. I looked around the table I was sitting at. There was another provider, two patients, a hospital administrator, a software developer, and a researcher. We were attending the same sessions and participating in the same discussions—we were literally, in Katie McCurdy’s words, walking in each other’s shoes.

At the end of Medicine X, I feel invigorated. I’ve met some amazing advocates in the U.S. and internationally who are working towards the aim of participatory medicine and patient-centered care. I’ve listened to many stories and shared my own. 

More than anything, I am thinking, what an honor it is to be a physician! As Jason Albrecht says, what a great privilege it is indeed to “walk alongside, to guide, and to follow our patients.”