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I am thrilled that TED has picked up on Who’s My Doctor and our efforts to improve transparency in medicine. 


Click here for link to TED talk 

TED prohibits “selling from the stage” and apparently my call to action at the end was too much of a “sell”. Here is the intended conclusion of my original TEDMED talk.

"Radical transparency won’t be easy. There will be many critics, some who have ulterior motives and have something to hide, and others who are just scared of changing the status quo. But if it’s anywhere we can unlock our imaginations, any place where we dare to speak up, with anyone who can make the impossible a reality, it’s here at TEDMED, with all of you.

I call upon everyone here—anyone who will ever be a patient or family member of a patient—to sign the total transparency manifesto. I call upon doctors, nurses, physical therapists, nutritionists, and all healthcare providers to take off our white coats and show our patients who we are. 

I’m taking the leap. This, today, is my pledge. Will you join me?"

The talk is here. I'd love to hear what you think.

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.

http://content.healthaffairs.org/content/33/10/1868.full



My blog entries have been light over the last month in large part because of significant travel. In between clinical shifts in the ED and co-leading a fantastic cohort of GWU’s Residency Fellowship in Health Policy, I was fortunate to be invited to speak at several conferences in October. Here are some highlights:

In early October, I was honored to keynote the Centra Health Foundation annual gala in Lynchburg, VA to celebrate the work of several hundred volunteers, all of whom were either breast cancer survivors or family members of survivors. The event was moving and powerful; I thought of how proud my mother would be to hear me share her story with so many courageous and inspiring women.

Next was the 12th Annual UC Davis Pre-Health Professions Conference in Davis, CA. Ten years ago, when I was the national president of the American Medical Student Association, I was approached by a student from a community college named Joubin Afshar who told me that he had started a conference for community college students who wanted information about the health professions. I attended the conference then, and was blown away by the drive and passion of these students. Nearly all were first generation college students, and for many, this was their first and only exposure to medical professionals.

Having been such a student myself, I vowed to return whenever possible. Last year and this year, I gave a keynote and led four workshops on leadership in medicine. Nearly 8,000 students attended the conference—many took overnight buses across California and even from the East Coast. It’s remarkable to see the work done by a small group of committed students. I wonder how many health professionals are where they are now because of the work of Joubin and his colleagues. (I also had the opportunity to see a friend and colleague, Dr. Davis Liu: an exceptional leader, thinker, and physician.)

My former Rhodes colleague who is now Chief Resident at Einstein Hospital in Philadelphia, Dr. Gary Huang, invited me to give Grand Rounds to the Departments of Internal Medicine and Emergency Medicine (pictured here with fellow Chief Resident and very kind physician Dr. Carlos Davila). I received many questions on what physician trainees can do to avoid burnout and deliver true patient-centered care. 

No answer I gave could have been as telling as the actions of Dr. Huang. As we were coming down the elevator, a woman in her fifties stopped us to ask directions to a particular surgeon’s office. I watched as Gary helped her figure out the name of the surgeon, led her to identify his location, then navigate her there. So many other people would have simply said, “I don’t know” and implied that it’s not their job to know, but not Gary. He took the time to help this woman in need, going far out of his way to do so. He didn’t do it to impress her or me (and I suspect he and his equally humble and caring wife Sherry would both be embarrassed by this blog post), but because it was the right thing to do. This action speaks volumes about the type of doctor he is, and answers the question that the residents asked: there may be many factors that make us disconnected from our patients, but it is within our abilities to treat patients as people, to value each person’s humanity, and to exemplify basic dignity and respect.

At the Urgent Matters Conference during the American College of Emergency Physicians meeting in Chicago, Dr. Jesse Pines expanded upon these themes. The other presenters (including my former attending at Brigham and now MGH Vice Chair, Dr. Ali Raja) and I spoke about how patient-centeredness and better communication can reduce overtreatment, improve patient safety, and transform care. The response was much better than expected, in no little part due to the amazing tweeting capabilities of one Dr. Seth Trueger (aka @MDAware).

Then it was on to Nijmegen, the Netherlands, where Corine Jansen (pictured), Jennie Grau, and their team organized the first-ever listening conference in healthcare. Initially, when my husband heard that I was speaking at listening conference, he laughed—isn’t it an oxymoron? And I have to say that I didn’t initially understand what a listening conference was really about (though the International Listening Association has a long history of hosting these conferences, and cosponsored this one).

The moment I showed up, though, I got it. Patients, family members, doctors, nurses—they shared their stories. They were powerful and unforgettable; indeed, as one participant commented, “the shortest distance between people is a story.” I heard a doctor speak about how he and his fellow neurologists assumed that their patients with Parkinson’s disease cared most about memory and managing their tremors. But when they listened—really listened—to their patients, they heard that what mattered most to them was sleep and sex. So they changed the entire medical encounter so that it wasn’t just about medication management, but also hired a sex and sleep therapist. Corine, Jennie, your team at REShape (where I took the photo with the best message ever): hats off to you for a fantastic conference and to the tremendous individuals I had the pleasure of meeting there.

This week, it is off to Grantmakers in Health Conference in DC then American Cancer Society in San Jose, CA. I hope to contribute more substantive blog posts soon; please write if there are particular topics you would like to see.

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?


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.

I am delighted to host a guest blog by writer and narrative medicine specialist Annie Robinson, who describes her journey with storytelling.

On a warm June afternoon, clustered around picnic tables, cradled in the mountains of the Berkshires in western Massachusetts, eight medical students from around the world began telling one another their stories. They were among approximately 40 students invited to participate in a weeklong intensive program run by AMSA for medical students interested in integrative medicine called LEAPS. As a graduate student of Narrative Medicine at Columbia University, I was asked to help facilitate the program.

Over iced tea and dark chocolate, they spoke of heartbreak and grief and divorce, of exam-stress and isolation and fear. They also shared brilliant visions of innovative approaches to medical care, and their aspirations to foster intimate relationships with their fellow medical students, their families and friends, and their patients. I listened with rapt attention as they described how, from personal struggles, conviction and vision were born for their careers as caregivers. I shivered, on that muggy summer day, knowing I was in the presence of my tribe. 

I was raised to revere the power of storytelling, which has been a critical component in how I have navigated my way through the world. It proved particularly useful when I entered the healthcare system in my early adolescence. I have spent over half of my life now as a patient, grappling with illnesses and issues of embodiment. In large part, it has been by speaking my struggles aloud that I have been able to heal. Telling my stories has allowed me to harness the power of the dark times to create connections and attain insight. 

As I sat there at LEAPS, witnessing medical students experiencing what I myself had experienced time and again–that relationships and wisdom come from baring one’s soul – I began to envision a way to enable more students to engage in this powerful narrative process. The seeds for my oral narratives podcast project Inside Stories: Medical Student Experiences were planted. I wanted to hear more student stories about the path to medicine, about struggles and triumphs, roadblocks and dreams. Through sharing over the course of that week, the students gained clarity and catharsis, and many remain in touch to this day. 

Inside Stories emerged from those conversations with LEAPS students. The idea was to develop a podcast platform that would enable medical students anywhere to both voice and listen to stories about medical student experience. Inside Stories’ mission is “to provide a means of personal healing, self-realization and empowerment through the sharing and receiving of personal stories, as well as to cultivate community among students in the often isolating medical school environment.” The interview process involves recording stories from current medical students, remotely or in-person. Recruitment has been done via word-of-mouth, social media platforms, and at medical humanities conferences. Student participants comprise a diverse demographic of men and women from all four years of medical school, of various races and nationalities, interested in medical fields ranging from OB/GYN to pediatrics to gastroenterology and many more. 

The topics addressed are vast. Hannah spoke about the challenges of navigating in medical school while being a mother. Petra reflected on how her spiritual path informs the challenges being a medical student. Katie discussed the encouragement she gained from finding her mentor. Leah shared how writing poetry aided her personal healing. Samar described how self-care practices helped her get through school. Angie talked about how her Syrian heritage drove her motivation to become a physician. Hieu shared his experiences as a community health worker in Uganda propelled his motivation to combat structural violence. Carlton described his motivation to pursue medicine in the South, to offer the African-American community a provider with whom they can identify.
    
To date, over 40 students have participated in the project. One participant reflected: “At first I was intimidated at the prospect of sharing my deepest feelings to a public audience, especially because I had never verbalized these feelings and in general I am a very private person. Ultimately, I'm glad I committed myself to this project and am proud to have my message out in the open.” Another described how sharing felt validating: “It made it seem real - everything that I had been through.”

I hope that by listening to the accounts of the courageous, insightful students whose stories constitute this project, others will follow suit and be inspired to share the personal stories at the heart of their journeys through the world of medicine.

If you or someone you know might be interested in telling their story about their experience in medical school, or if you have further questions about Inside Stories, please contact Annie and visit this website and on Twitter @Inside_Stories.

The law says yes. Prior to 1996, patients had to sue to see their own records. Since HIPAA—the Health Insurance Portability and Accountability Act—patients are guaranteed by law to have access to their records. However, the process for getting medical records is often so cumbersome that people don’t look at them, and usually not well after their medical visit.

In my medical training, I learned that the medical record is a tool for doctors to communicate with each other. But could it be harnessed as a collaborative tool for patients?

When Patients Read What Their Doctors Write

My latest NPR article discusses ongoing national experiments to provide open access to patients not only of their test results, but also their doctor’s notes. Participating doctors were initially opposed to the concept, but the results from the experiment have been striking:
·      80% of patients who saw their records reported better understanding of their medical condition and said they were in better control of their health;
·      Two-thirds reported that they were better at sticking with their prescriptions;
·      99% percent of the patients wanted OpenNotes to continue

When patients see their records, there's more trust and more accuracy. But that doesn’t mean that OpenNotes is a panacea. There are new controversies that are arising. I address them in this article, and also on Weekend Edition. Listen here for the interview with legendary journalist Linda Wertheimer.

What do you think? Should patients have full access to what their doctors write about them?