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.

Guest: Narrative Medicine & Inside Stories

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.

Should Patients Have Total Access to Their Medical Records?

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?

Open Payments: Will Transparency Hurt Or Help Patients?

Today, I was interviewed on CBS This Morning about whether the government’s Open Payments website should be delayed. This is part of the Physician Payment Sunshine Act that will provide public access to payments made to physicians by pharmaceutical and medical device companies.

Over the years, I have become increasingly concerned about the harmful effects of financial conflicts of interest on patient care. Dozens of studies have shown that financial relationships between doctors and drug/medical device companies influence physician prescription practices.

My research on patient-centered care also shows that patients are concerned about these potential conflicts of interest and how they may affect their care. Our patients deserve to know how their doctors are paid and whether this may affect them. The Sunshine Act will provide much-needed, critical tools for increasing transparency and accountability, and will help exert pressure to prevent inappropriate financial relationships between doctors and industry in the future.

The Open Payments website that will display the payments to doctors has already been delayed by more than a year. Now, in light of some technical problems, physician groups including the American Medical Association are arguing that there should be another six-month waiting period. While it is important to provide doctors an opportunity to review and dispute payments to them, this should not delay timely release of physician payments data to the public.

The American Medical Association argues that inaccurate information could undermine trust. If physicians want to improve trust, they can take a proactive approach and begin conversations with patients. They can send out an email or letter clarifying their affiliations with drug companies. They can participate in Who’s My Doctor and explain their philosophy publicly, online. They can have one-on-one conversations with those who have questions. Such openness will only improve the doctor-patient relationship, improve trust, and increase accountability.

For those doctors who truly are ashamed of their payment history, perhaps they can reevaluate their financial relationships. As former Supreme Court Justice William O. Douglas said, “Sunlight is the best disinfectant.” The sunlight is available now. Physicians and patients alike should embrace it, now.

Parts of this post were part of an open letter I sent to Ms. Marilyn Tavenner, CMS administrator, on May 27^th 2014 with the subject of “Revision of a currently approved collection; Title of Information Collection: Registration, Attestation, Dispute & Resolution, Assumptions Document and Data Retention Requirements for Open Payments (CMS-10495).”

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.

TEDMED!

This week, TEDMED announced its final speakers for the dual San Francisco-Washington, D.C. event. 

 

TEDMED 2014

I am excited and honored to be part of this list, along with a phenomenal group of healthcare leaders & entrepreneurs including Abraham Verghese, Thomas Goetz, Danielle Ofri, Betsy Nabel, and many more.

My talk will be on radical transparency in medicine. More to come soon--and please join us at the Kennedy Center in September!