• Feed RSS

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?

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 27th 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).”

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



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!

I am delighted to host this guest blog from Dr. Eric Bing, physician and professor of global health. We share a passion for fighting disparities in health, a passion is deeply rooted in personal experience, and that comes through in this poignant essay.
 
I was a Harvard-educated physician yet I couldn’t save a patient from an easily preventable disease. In her death, my life found new purpose.

Her name was Lorraine. She was abandoned when she was just six weeks old—left alone in a dark building on a cold winter’s morning. Wrapped in only a soiled blanket, she had nothing to soothe her cries. She might have died if not for those cries, for someone heard her and carried the tiny body to the infant’s grandmother. In Philadelphia in the 1930s, neighbors knew everything about each other, and the existence of this child was not a secret. Her grandmother took her in. She had already raised 15 children of her own, so what was one more? 

As a little girl, Lorraine grew up fast. Even with her sharp mind, like many black girls at that time, she had little money and even fewer opportunities. She slept in the crawl space under her grandmother’s stairs. When she was 12, Lorraine began working as a domestic servant, cleaning houses and caring for children not much younger than herself. She later dropped out of school, and while still a teenager began having babies of her own. 

She was so busy taking care of others that when she began having light, occasional vaginal bleeding, she ignored it.  She had already gone through menopause so this was nothing to worry about. But over time the light bleeding became heavy and the occasional occurrence became alarmingly frequent. After an anxious trip to the doctor, tests confirmed that she had cervical cancer, caused by the human papilloma virus she had acquired years earlier.

Lorraine’s life was once again in danger, but this time from an easily preventable disease.

Cervical cancer can be diagnosed in its earliest stages by a simple Pap smear. In developing countries where Pap smears are too expensive, it is being diagnosed using a few drops of vinegar or prevented in girls with a simple vaccination. And it can be treated at an early stage by freezing lesions off, like a wart. But in order for early care and treatment to work, you must not only have access to care, you must use it. And like many women, she did not do that; the needs of others always came first.

By the time her cancer was diagnosed, it had already spread throughout her pelvis. From there it would move to her liver, bones, and lungs before spreading to her brain and taking her life.

I cared for Lorraine until the day she died, however she had cared for me from the day I was born.

Lorraine was my mother. And her death from an easily preventable disease changed my life.

I was a psychiatrist in Los Angeles when my mother died in 1999. Today I am the senior fellow and founding director of global health at the George W. Bush Institute in Dallas and the founding director of the Center for Global Health Impact at Southern Methodist University.

At the Bush Institute, I helped launch, Pink Ribbon Red Ribbon, an innovative public private partnership to combat cervical and breast cancer in Africa and Latin America by increasing access to cancer prevention and treatment. In developing countries, where Pap smears are too expensive, cervical cancer can be diagnosed by putting a few drops of vinegar on the cervix, which is then examined under a lamp. Lesions appear white and can be treated at an early stage by freezing them off.
A recent study from India showed that this simple vinegar test that costs less than $1 can reduce deaths by nearly one-third. There are also inexpensive vaccines that can prevent the viral infection entirely. We can defeat cervical cancer now in simple, cost-effective ways.
The challenge is access.  In Pharmacy on a Bicycle:  Innovative Solutions for Global Health and Poverty, Rice University business professor Marc J. Epstein and I show how even access to care barriers can lowered in developing countries for many diseases, by shifting care to lower-cost providers, focusing on efficiencies, strengthening existing systems and by stimulating partnerships among governments, businesses, nonprofits, entrepreneurs and women of all ages. And, as my mother's death taught me, we must mobilize women to recognize their risk and realize that by protecting their health, they can live to protect the ones they love.
As my mother lay dying in her home in North Carolina, her house was once again full— with people who had been helped and touched by her over the decades. My mother had scoffed at the notion of filling a funeral home with flowers for the dead. "Give me my roses while I can smell them," she had said.  So people obeyed, coming to bid farewell while she could still hear them.
Despite the steady stream of people at her bedside, she fretted in her final days about what she saw as her lack of accomplishment and lasting impact: She was intelligent but uneducated. She was courageous yet lived in fear. She had done nothing with her life, she felt. She had not fulfilled her life's mission.
When she was finished reliving what she thought was a string of disappointments, I began to re-tell her life story—not as she understood it—but as I saw and experienced it as her youngest son.
I told her that I believed that her life's mission was to unleash passion and purpose in the lives of those she touched. Not only had she raised five children who went on to careers in business, education and medicine; she had applied her quick mind, hearty laugh and steel backbone to helping anyone she came across who was in need.
She taught us that love is what creates a family. She helped us see that a good heart must be coupled with hard work in order to succeed. Those that she had helped were now helping others, and they would in turn help others, and they, still others. Through others, her spirit would live on, continuing to change the world.
As we spoke, I could see a shift occurring within her as she sat there quietly. Softly, a warm smile filled her face, as though she was looking in the mirror and for the first time loved the woman she saw. 

My mother died in my arms, leaving the world far more peacefully than she entered it. In her death, my life found new purpose.

Eric G. Bing is the co-author of "Pharmacy on a Bicycle: Innovative Solutions for Global Health and Poverty" and senior fellow of global health at the George W. Bush Institute. He is also a professor global health at Southern Methodist University and founding director of the Center for Global Health Impact.

A version of this article originally appeared in the LA Times, June 23, 2013, as A cancer that need not kill, by Eric G. Bing.  It is reprinted here with permission of the publisher.

This week, I had the honor of speaking with Leonard Lopate, the award-winning host of National Public Radio's WYNC show.

Among the topics, we spoke about:
* What is cookbook medicine and why aren't checklists always good?
* What happens when doctors don't listen? 
* Why is getting a diagnosis so important?
* How can patients help doctors help them?
* Is malpractice a big problem?
* How will the Accountable Care Act shape the future of medicine?

We received many comments from listeners. Among those posted is one from Ellen from Upper Manhattan:

"I have no problem helping a doctor be as good as she/he can be with me. The anger we feel at doctors comes directly from our fear of helplessness in a vital aspect of our lives.... For me, the antidote is empowering and caring about myself."

What do you think? I'd love to hear your thoughts!

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.
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?