Who’s My Doctor on TED.com!

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.

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?

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).”

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!

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.

Featured in British Medical Journal's Editor's Choice!

British Medical Journal has just featured Who’s My Doctor in their Editor’s Choice!

“As a physician in Washington, DC, [Dr. Wen] has become increasingly troubled by conflicts of interest that are apparent to doctors but hidden from patients. She sees full transparency as part of “a renewed professionalism.” This should extend beyond payments from industry, she says; doctors should also make clear to patients how they are reimbursed. Payment structures such as fees for services (or, in the UK, the Quality and Outcomes Framework) incentivise doctors to order tests or to provide specific treatments. Patients need to be able to ask whether tests and treatments are being prescribed because they are in their best interests or because they benefit the doctor, she says….

…Not everyone will welcome such moves with open arms. Wen reports extreme hostility to her initiative from some doctors [see link to article], and McCartney and colleagues acknowledge that being required to declare sources of income will concern some. But declarations of interest are now standard practice for publication in medical journals. The same should be true for our dealings with patients.”

Please join us in our campaign for transparency.

On NPR This Weekend!

My NPR op-ed about Who’s My Doctor and the need for transparency came out this weekend!

http://www.npr.org/blogs/health/2013/12/14/250714833/before-the-prescription-ask-about-your-doctors-finances

There has been an outpouring of comments on the NPR site and on Facebook.

More thoughts and reflections to come soon. For now, let me share wise words from my long-time mentor, Dr. Fitzhugh Mullan:

"Who can be against transparency? Surely not physicians. Our job is to treat, heal, and provide succor to our patients. Is there disagreement here? 

If we have interests, limitations, or preoccupations that would compromise or confuse that mission, shouldn’t we disclose that? As a patient (which we all are), I would hope so. 

Dr. Leana Wen’s campaign is one we should all embrace.  If any of us have trouble signing on, perhaps it is time to pause for a Hippocratic gut check. If not, let’s make Total Transparency our practice mantra."

--Fitzhugh Mullan, MD, Murdock Health Professor of Medicine and Health Policy, Professor of Pediatrics, George Washington University

To the Doctors: A Response (Part 2 of 2)

This is my second blog in response to some comments that were posted after my new transparency campaign, Who’s My Doctor, was featured on KevinMD and Medscape. As with the first blog, the responses from dissenting doctors are divided into three themes. I have listed these themes, followed by direct quotes and my responses. 

Theme #3: There are many other problems in healthcare to tackle. It’s stupid to tackle this issue. 

“She may be an ER doc but she does not seem to think. Does she think it will solve anything being transparent? Will that solve the HC crisis?”

“This is totally absurd. I am way too busy taking care of my patients who need my service as a physician, to spend my time defending myself against some media manufactured crap.”

“Should I tell the psychotic patient "yes, you're correct. Those voices in your head telling you to kill your mother are not your imagination". Of course not. Why? Because that patient is insane. As insane as our government manipulated medical system. Most ideas that I read about are just tinkering with an insane system. Insanity is making a medical insurance company pay for routine care. Does your auto insurance provide coverage for every ding and scratch of paint, oil changes, brake pads? Of course not. Government meddling, the purpose being for power and control of the citizen is what it's all about. Plain and simple. Boiled down to its raison d'etre.”

“Senators, Congress members and managers across every major industry accept gifts, business incentives, and informative handouts from their vendors - this is called free market, and any information exchange is protected by the 1st amendment. You fixers, like the meddling Dr. Wen, will be unpleasantly surprised to awaken to NO DOCTORS WILLING TO PRACTICE MEDIVINE (sic) UNDER HYPER-REGULATED GOVERNMENT CONTROL!” 

While there are no doubt other problems in our medical system that require other solutions, including malpractice and high cost of care, transparency is one way for us as physicians to say to our patients that we want to do our part to counter fear and reinstill professionalism. (The opposite is also true: if we are hiding from our patients our financial incentives when we order a test or procedure, that further leads to lack of trust and lack of professionalism.)

There is evidence to show that disclosure improves trust, and that patients want trust. In a recent study, “Most (patient) agreed that disclosure of competing interests by doctors is important (84%), believing this disclosure would help patients make better informed treatment decisions (78%). Eighty per cent of patients stated that they would have more confidence in their doctor's decisions if interests were fully disclosed, with strong support for verbal disclosure during the consultation (78%).” While some people may not wish to know about their doctors’ disclosures, many people—the majority—do. Having a voluntary disclosure by doctors gives interested patients that opportunity to find out.

One final point I’ll add to the doctors who really don’t like the idea of transparency is that disclosure is happening, with or without doctors’ participation. Info about doctors is increasingly out there, about “ratings”, “quality”, “patient satisfaction”, etc. Doctors may not like this—and we may not even like the disclosures that are getting put out there about us. But since it’s out there, why not have a website where doctors can control some of that information, and add our own philosophies of practice and who we are? Who’s My Doctor is an attempt to take back that control and put it back into the individual doctor's hands to say, this is who I am, this is why I do what I do, and I am telling you this because I have nothing to hide--everything I do is in my patients' best interests. 

To be sure, this is not the only solution to the vast problems in healthcare. However, we also cannot say that just because there are huge problems, that we should not do our best to do some small things that may have positive impacts. 

Theme #4: All of this information is irrelevant to patients. It’s not their business, and I wouldn’t want to know this about my doctor. 

“I think Dr. Goody 2 Shoes is not a strong enough title for Dr. Wen. Pretty soon we will have disclose where we buy our lab coats from, and what toilet paper we use. NO, this type of idiocy must stop. If this is allowed to proceed I envision my gas station attendant disclosing his investments in the Oil Company he works for, and my Server telling me that she came up with the recipe for the hot sauce on the table BEFORE getting to the specials. C'mon, wake up! Stupidity Outrageicus (sic)!!”

“I don't need to know that my doctor has an investment home in Maui or that she helps run her Synagogue's youth group and supports the World Wildlife Federation and the Coalition for Home Schooling or that she collects Precious Moments figurines."

“'Ballroom dancing', 'will never smoke a cigarette'. Please!! What will be next, 'I have never stalked anyone', 'I don't see porn'” 

Research shows that patients are more likely to comply with recommendations when they come from a doctor whose world view aligns more closely with their own. Who’s My Doctor offers the opportunity to find doctors who have particular expertise and interest in certain fields, such as preventive health, alternative medicine, women’s health, etc. This information is voluntary, so doctors don’t have to discuss their personal views on these issues. Some doctors choose to disclose personal stories and views, because we believe it humanizes us, and that sharing the stories allow patients insight into who we are and how we think.

We don’t presume that all information is relevant to every patient. Some patients may not wish to know their doctor’s revenue streams; others may not want to know their doctors’ personal information. However, some patients will want to know this information when making a decision about which doctor to choose. Rather than having doctors deciding what information is important, we prefer to give that choice to patients.

All of this is in the context that participation is voluntary, and doctors can choose what information they would like to disclose. Some doctors wish to only disclose potential conflicts of interest; others wish to have more personal information including their philosophy of practice of preventive care, women’s healthcare, end of life choices, etc, available for their patients to see. 

Theme #5: You pretend to represent doctors, but you can’t because you’re too [young, inexperienced, female, foreign, Asian, “socialist”, “fascist”, “anti-American”, stupid, etc]. Besides, you have personal gain, aren’t you making money from this thing? 

(The comments on the original sites related to this theme are not suitable for posting on this blog—if you’d like to read them yourself, please see links above.) 

I started Who's My Doctor entirely voluntarily, because I believe it is the right thing to do, not because I will have some personal gain from it. It is not a profit-making entity, nor will it ever be. My medical school is not a tenure-track institution so I personally do not gain financially or academically from this program (if anything, with the objections from so many doctors, putting myself out there could result in significant professional jeopardy).

At the moment, I volunteer my time at least 20-30 hours a week to this project because I believe it is important for our patients. I reiterate that I do not make any money from Who's My Doctor at all, and in fact volunteer my time to this cause that aims to bring together doctors and patients to the cause of transparency, service, and professionalism. 

I also do not profess to represent all doctors, all patients, or the healthcare system. Quite the opposite; I think that for too long, we have had a hierarchical structure that is doctor-centered and not patient-centered. I represent myself as a doctor and patient and caregiver. We need to hear the voices of more patients and caregivers--people who don't have "titles" or "legitimacy" as traditionally defined, but who have extremely valuable opinions when it comes to their health. 

It is to understand what people want from their healthcare that drives me to do what I do every day. You don't need an MD or some title in a hospital to speak on healthcare issues. In fact, the most important voices are the ones that aren't being heard.

Thanks, everyone, for reading. I'd love to know what you think; please comment below. If you are interested in joining Who’s My Doctor, please visit www.whosmydoctor.com and our Facebook page.

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?