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!