What to Do When Your Mother is Diagnosed With Cancer

Holidays are a time for family. This is the third Christmas without my mother, and in her honor, I am posting an article previously published in Women's Health Magazine (posted here with their permission).

Growing up, I always thought of hospitals as having a certain mystique that was impenetrable to the outside world. White-coated figures paraded through long hallways and entered doorways marked “restricted access," behind which I imagined miracles happened.

My mother, Sandy, father Xiaolu, me, and my sister Angela

As a medical student, I continued to hold the medical world in great awe. All that changed the day that my mother became a patient. After a year of telling her primary care doctor that something was wrong, she was finally diagnosed with metastatic breast cancer—cancer that, by then, had spread to her lungs, her bones, and her brain.

I was wracked with guilt. I was training to be a doctor—why didn’t I figure out that her symptoms indicated cancer? Why didn’t I try to convince her doctors to look harder? Why didn’t I know that medicine was so fallible?

Over the next several months, I saw firsthand not only how difficult it is to navigate the healthcare system, but also how scary and unwelcoming it can be. After her cancer surgery, my mother was supposed to be recovering, but every few hours, someone would come in and switch on bright lights. There were loud beeping noises around the clock; soon, she lost track of day and night. Her providers were not bad people, but they were overworked and often disconnected from the needs of their patients.

I struggled to find the right balance between advocating for my mother and being too pushy. Actually, it was my mother who was really afraid—afraid that we’d make her doctors so angry that they would give her worse care, or even fire her as a patient. She had many other concerns too, such as how to tell the rest of our family about her diagnosis, and how to take care of my younger sister, who at the time was just nine years old.

Reflecting back on the experience, I have five lessons for other young women whose lives are changed forever by their mother’s cancer diagnosis:

1) Be there for her. My mother was a proud and capable woman. She was among the first class of college graduates after China’s Cultural Revolution, then immigrated to the U.S. by herself. The last thing she wanted was to feel that she was dependent on other people. But cancer can be lonely and overwhelming. Though she never asked for help, I know she was grateful that I was there to accompany her to terrifying experiences like the first chemo appointment. Even if you can’t physically be there all the time—I was attending medical school 3,000 miles away—there are things you can do to offer your support. For us, it was talking to my sister and updating other family members. Be conscious not to reverse roles and treat your mother as if she can’t care for herself; rather, offer help and be there to do what needs to be done.

2) Do your research. Use whatever tools are at your disposal—even if it’s just an iPad. Find out about her doctors. Research her diagnosis and possible treatment options. Join online discussion groups. Not only do they offer supportive communities that you can connect with, but they can be good sources of advice. That’s not to say that all the advice you find will be relevant, or that you need to read every single journal article on her cancer. But being informed will help you to understand the medical jargon and come up with questions to ask her doctor.

3) Become an empowered advocate. Try to go with your mother to her doctor’s appointments if you can (if not, find another close family member or friend to go with her). Bring all her medications and other important items. Help her practice how she’ll communicate important details to the doctors. Prepare a concise list of questions. If she is too shy or feeling too unwell to ask questions herself, be ready to take over and advocate for her to get the best care possible.

4) Ask her how she’s doing. Many people don’t know what to say to a patient with cancer. My mother’s friends would see her losing her hair and becoming very thin. They would visit from time to time, but I never heard them ask her how she was doing. There were probably too afraid to ask, but you don’t have to be. Let her know that you want to have open conversations about her health—that it’s OK for her to tell you how she’s feeling. If you live far away, schedule regular phone calls or Skype conversations. Sometimes, you will hear things that really surprise you. For example, I found out that my mother was really hating this one medication regimen and having terrible side effects, but she was doing it because she wanted to prove to us that she was strong.

5) Take care of yourself. It’s easy to forget yourself in a stressful time like this. Remember that you won’t be of any help to anyone if you are ill, and your mother will be even more worried if you become unwell. Get enough sleep. Don’t forget to exercise. Figure out your own support system. This is an incredibly difficult time for you, too, and you will need to draw upon the support of your other family and friends. Throughout her treatment, there will be good times and bad times, so develop and solidify support systems that will benefit you both.

After eight years of fighting, and multiple rounds of chemotherapy, surgery, and radiation, my mother lost her battle with cancer. I think about her every day. I miss her terribly, and wish she were there to walk me down the aisle at my wedding and to cheer when my sister received her college diploma.

Perhaps my most important lesson to other young women is to cherish the time you have together. A cancer diagnosis is a wakeup call that our time is limited. I feel fortunate that I had those eight additional years to spend with my mother, to really get to know her and talk with her. Her illness made me recognize medicine’s limitations, and also made me appreciate the gift of life—and the irreplaceable bond between mother and daughter.

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.

Guest Post: When Not Knowing Price of Medications Costs Lives, by Dr. Ali Khoshnevis

I'm pleased to welcome this article by Ali Khoshnevis. Ali is an optometrist and CEO of WeRx.org, a pharmacy price comparison site and app with the goal of helping patients find the lowest cost medications in their neighborhood. Please read on for another take on transparency.

My brother and I, both optometrists, had a heart-to-heart discussion about the loss of one of our patients. We realized he was not taking his medications, which was leading to vision loss. When pressed, the patient said he had a choice of eating, supporting his family, or purchasing his medication.  

He was under the impression that the $150 price for his generic cholesterol-lowering medication was "about the same" at any nearby pharmacy. We later realized that some of those nearby pharmacies charged from $11 to $25 for the same medication. Our studies revealed this type of discrepancy existed for almost all of his medications.

Our patient lost his life after suffering a stroke.  This was a bitter pill to swallow, but his loss led us to a period of discovery and determination to prevent this from happening again.

His life could have been saved with the knowledge of the vast price differences at retail pharmacies. That's when my brother and I began our mission to promote transparency in retail drug pricing. I have left the practice of optometry to dedicate my career to addressing this problem. 

This is when we met Sumanah, a 26-year-old event planner in New York City suddenly diagnosed with congestive heart failure. Sumanah was like many typical 26-year olds, without health insurance and no savings capable of paying for her medical bills. Taking 10 medications for her condition, Sumanah was paying full price at what she “thought” was the cheapest pharmacy. After she discovered that not only were some pharmacies cheaper for the same exact medication, she learned that some pharmacies could be upwards of 16 times more expensive than another pharmacy right across the street. Using this information, Sumanah was able to price shop for the right pharmacy and save a lot on her prescription costs. This story, although not uncommon, shows how important shopping around for medications can be.

In their May issue, Consumer Reports published an article confirming the experience Sumanah and many others have each time they go to fill a prescription. The study focuses on five of the most prescribed medications in the U.S. and reviews more than 200 pharmacies for price comparisons. The findings show the details of each pharmacy and drug researched as well as the overall discrepancy between the lowest cost pharmacy and the highest cost pharmacy. For the same prescriptions, the difference was a whopping $749 per month or 447% between the highest and lowest cost options.

Price shopping prescriptions from one pharmacy to another can dramatically reduce out-of-pocket costs for patients without changing medications. The cost savings can be vast and can help those unable to afford medication in the past, be able to consider options at a low cost pharmacy. The current lack of pharmaceutical price transparency causes many patients to simply stop taking their medication because it is too expensive for them to afford, which is a truly dangerous option for patients to consider.

Currently, medication non-adherence is cited by The IMS Institute of Healthcare Informatics as the largest contributor to healthcare costs in their June, 2013 study, “Avoidable Costs in U.S. Healthcare.” The study shows that a patient’s inability to stay on a prescribed medication is estimated to cause over $100 billion in avoidable healthcare costs due to the resulting health complications, hospital visits, and additional advanced treatment

Many patients, and their healthcare providers, assume medications at different local pharmacies are about the same price. We’ve been operating solely in our roles as care providers for too long, and have been oblivious to changes in other parts of the healthcare system. While we work to keep patients healthy, parts of our healthcare system try to maximize profits at the expense of our patients and the entire system.

We invite you to join us on a mission to improve healthcare and save lives.

Guest Post: Trust First, by Dr. Aaron Stupple

In this guest post, I am thrilled to host Dr. Aaron Stupple, a resident physician in internal medicine at Beth Israel Deaconness Medical Center. He is a founding member of Who’s My Doctor and an excellent humanist and doctor. Follow @astupple.

Leana Wen’s Who’s My Doctor? campaign is an important step to help health care. Detailed on her blog as well as recently on KevinMD, she endorses a total transparency manifesto where physicians can describe their sources of revenue and other potential conflicts of interest. It’s an effort to build trust.

We can’t fix health care without patients’ help. A quick look at the numbers for chronic disease are compelling enough—half of Americans have at least one chronic disease, and it accounts for 75% of all health care costs. If we don’t make an impact there, we really won’t make an impact at all.

The trouble with chronic disease is that it depends so heavily on behavior—eat well, exercise, don’t smoke, and take your meds every day. Until we can truly engage patients, we will struggle.

How do we engage patients? How do we get them to literally restructure how they live their lives? How do we get them to agree that they have a disease, that they need to swallow pills every day and risk the side effects, that they need to fit in time for exercise, that they need to arrange with family and friends and coworkers different ways to eat, to not smoke? If we truly want them to get better, we’re truly asking the world. We’re asking them to adopt our world, on our say so. Doctor’s orders.

We simply can’t do it if they don’t trust us.

If we have an obligation, a professional and moral contract with society, to which we swore an oath, and for which society has granted us privileged knowledge at great personal and civic cost, then we need to demonstrate our trustworthiness to our patients.

There’s no one way to do this. But Leana Wen has offered an excellent place to start: declare, openly and publicly, the totality of our agenda. The truth is, we don’t have to be a foot soldier for a pharmaceutical company to have an agenda. 

A patient came to see me the other day, and I was in a fantastic rush. I was behind in my clinic schedule, and I was set to deliver a lecture to our medical students in five minutes. Thankfully, my last patient only needed a tuberculosis skin test. As I hurried about setting things up, he mentioned he was having a lot of stress. I asked him if it was impairing his ability to live and work, and he said no. The calculator in my head told me that the stress in this otherwise healthy young man’s life couldn’t be thoroughly addressed in this one visit, that he’d get his day’s value with the skin test, and I could make it to my presentation on time.

Watching my vigorous preparations, he apologized for taking up my time.

I realized that I had allowed my own desire to be an important teaching figure to supersede his need for health care. Apologizing for my rush, I sat down and listened to him tell me about the causes of his stress. We had a long chat, and afterward I gave him some perspective that he genuinely took to heart. I emailed my powerpoint to the med students.

In the busy life of medicine, establishing trust is hard. The forces that inform our priorities as physicians are often subtle. If nothing else, Dr. Wen’s transparency campaign offers us an opportunity to reflect on those forces. Rather than a threat, I see it as one of many tools that I can use make patients comfortable with what I’m asking them to do.

To the Doctors: A Response (Part 1 of 2)

Last week, KevinMD published my article calling for participation in the new transparency campaign, Who’s My Doctor, on his highly trafficked website. Medscape also highlighted the campaign in an report. The articles drew many responses, including from some doctors who were not thrilled with the concept of transparency.

My next two blogs will report the five major themes and direct quotes, and my responses.

First is Theme 1.  If you don’t want to read the (rather entertaining) quotes, here’s the general idea: “Doctors need drug companies. We’re not influenced by them. They just pay for lunches, and I need to eat. Bedsides, it’s not my patients’ business what I do.”

“If I get some pizza from a drug rep, I'm not going to use that med for every patient regardless of need, and I don't think the patient needs to know that.”

“Do people really think I will change how I treat my patients if I am given a pen or a pizza, GOD forbid, a lunch? This whole thing is insulting to physicians and shortsighted.”

“I don’t have money or time to buy my lunch. Drug companies know that. I get food and learn some stuff, so what’s wrong with that?”

“Drug manufacturers will not uncommonly provide lunch in my office so that I can have time to discuss their medications. It is quality time because, unlike many rude physicians that I've heard about, I personally am there talking with them, instead of hidden back in my office just consuming the food.”

"I see all representatives equally and have no endearment to any one product.”

“I happen to, once a month, go to a staff meeting where a drug rep has brought in takeout food which I eat while internally rolling my eyes at their sales spiel.”

“Is the lunch that they provide me and my staff an 'association' by the NEJM's study (I had quoted a New England of Journal Medicine study that 94% of doctors have some affiliation with a drug or medical device company)? Probably. Is it inappropriate? Absolutely not. It is essential that I get the best for my patients. The lunch means that I get to eat that day while still doing that.”

“I implore all physicians to defend the freedoms of the American way of life and to do everything possible to defend the individual patient. If helping an individual patient involves learning about a new medication from a Pharmaceutical Representative, then never be ashamed to do it. Take advantage of all options, as that is the American way. Your patients deserve it.”

“The USA is still a free market society and sometimes that's how business is conducted.”

“Maybe Dr. Winn (sic) needs to move to Russia or Cuba where she can practice her style of medicine!”

Dozens of studies have shown that even small gifts affect physicians’ prescribing habits, and that doctors suffer from the “you but not me” phenomenon—where we believe our own prescription habits aren’t affected (which implies that pharma is somehow wasting their marketing efforts, a contention we know is not true).

Some have raised the point that drug reps are helpful for educational purposes, or that they need the lunch to get through their day. As a physician who invested over 14 years of my life in medical training, I find it offensive and disingenuous for doctors to say that we are interacting with drug reps "for our education". There are many free, impartial sources of information to learn evidence-based guidelines on new protocols and treatments. Drug companies are beholden not to providers, or patients, but to their stakeholders, and we as professionals (making plenty of money to buy our own lunches!), and we need to uphold our professional duties to do what's best for patients.

(For more information, there has been excellent work done in this field. See information about Healthy Skepticism, No Free Lunch, American Medical Student Association, Dr. Peter Mansfield, Dr. Joel Lexchin, Dr. Marcial Angell, Dr. Ben Goldacre, among others.)

All that said, there *might* be a difference between doctors accepting money to be a “key opinion leader” for a drug and leading a multi-site clinical trial. There are multiple websites where doctors’ affiliations with drug companies are already out in the open: ProPublica has a website, and also Accountable Care Act will have a public website in Oct 2014. Who’s My Doctor allows doctors the opportunity to explain the degree of interaction with drug companies. If you as a doctor think that your interaction with drug companies is good for you and your patients, then you have a chance to explain why.

Ultimately, the goal is not to point fingers and say that doctors who associate with drug companies (or that have investments or other specific revenue streams) are bad, but rather that our patients should know about it. Perhaps it could even be seen as a good thing that, as an oncologist, you lead large pharmaceutical-funded research studies. We need this transparency. Just as doctors disclose our conflicts of interest to each other in journals and conferences, we should disclose them to patients.

Finally, there is the issue of whether our patients should know what we are doing. The next question answers this from the standpoint of social accountability, but here’s some food for thought directly on the question of drug-company sponsorship: if doctors are taking money for something that we are ashamed of letting their patients know about perhaps it’s not something they should be doing.

Theme #2: Doctors aren’t accountable to society. We are just private citizens conducting business.

“When I became a physician, I don't recall taking an oath of poverty… Why the heck should anyone know about my investments?”

“I find it an invasion of my privacy to disclose where my income comes from. My patients don't disclose their incomes to me.”

“I'm not a public servant.”

"Maybe we can talk about accountability when all my debt has been paid off.”

“Anything that I obtained from the US taxpayers for funding of my medical education was paid back in spades."

“The individual's right of privacy is in the constitution. The "sunshine act" violates this right. Therefore the "sunshine act" is unconstitutional.”

I cite from an article for the Lancet that some colleagues and I wrote about social accountability in medicine:

“Service is the highest calling for all health professionals and, upon beginning our studies, each of us enters into social contract between our profession and the public to serve in the public’s best interest. Using physicians as a specific example, the World Health Organization defines social accountability in training as ‘the obligation to direct their education, research and service of activities towards addressing the priority health concerns of the community, region and/or nation that they have a mandate to serve.’”

Here is an excellent article about the role of physician-as-citizen.

If we are to use an economic argument, though medical students face heavy debt, our medical education is still heavily subsidized by taxpayers. Every student interviewing for medical school understands that our job is to be socially accountable to our patients and our society. They choose to enter medicine willingly, and to take the debt and our obligation willingly. We swear a Hippocratic Oath where we place patients as our first priority.

I argue that it very much is our patients’ business how we get paid, because it affects their healthcare directly.

In addition, even if you don’t believe that doctors are public servants and are just responsible to themselves, remember that disclosure is standard business practice, i.e. lawyers have to disclose their conflicts to every potential client.

Questions and comments? Please post below; I’d love to hear from you! Also, please visit our new website (open while under construction): www.whosmydoctor.com and our Facebook page.

Guest Post: Let's Protect Ourselves From The Harms of Overdiagnosis

by Sonia Gow

About 20 years ago I was ill with a mystery ailment. The symptoms were flu-like and I felt totally drained of energy. My doctor said he couldn't help me because he didn't know what I had, how I got it, how long I would have it, or how I could feel better. Basically, I was on my own.

This was the beginning of my journey to figure out how I could regain and maintain my good health. I read everything I could about it, altered my diet and exercised. Then, because I enjoyed the exercise and I felt so much better, I became a fitness professional so I could help others enjoy exercise and feel better, too.

I was supposed to work with healthy people but because my focus is working with people over 50 years of age, I never met any. Most "boomers" are taking at least one prescribed medication, and frequently many more, usually related to hypertension or cholesterol. For the past few years I've been working primarily with people living with Parkinson's disease and they are prescribed numerous medications, as are many of their partners or caregivers.

Because of all the medical care my friends receive, there are lots of stories about their visits to the doctors and about their treatments, but what really hits home with me is how this all affects their lives. How their activities are limited or the time it takes for medical appointments. There are family activities and other fun things they miss out on. I recently heard this referred to as "missed opportunities". 

While the physical, emotional, and financial aspects are easily acknowledged as having value, these lost opportunities frequently are not. But they do have value. They are about our lives.

Recently I discovered several books written by doctors and journalists about overdiagnosis and overtreatment, and they confirmed what I already suspected - that people were not only being tested and treated unnecessarily but that some were being harmed, too. They thought they were doing the right thing by following their doctors' orders but were unaware of the harms or that there might be other options, and they were unnecessarily enduring additional hardship. 

What is wonderful about Dr. Wen's book, When Doctor's Don't Listen: How to Avoid Misdiagnoses and Unnecessary Tests, is that she not only explains the problems but offers user-friendly suggestions on how to speak up and work with your doctor to ensure that you receive the treatment you need for the ailments you have and avoid medical treatment for the ones you don’t have

I am so pleased to see that more awareness is being directed to overdiagnosis and overtreatment.  I started writing a blog, Patients Are People Too, to direct other patients to the information that's out there so they can make better decisions. .

I never did get a definitive answer about my mystery ailment from any of the doctors I've seen over the years, so I guess the first one did me a favor. Because of him, I've been able to figure out what works best for me. I hope you'll be encouraged to do the same.

Sonia Gow is a patient—and person—and blogs at patientsarepeople.com.

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?

Calling All Doctors and Announcing New Campaign for Total Transparency

Our healthcare system is broken and in dire need of reform. We all know the statistics: the U.S. spends $2.7 trillion on healthcare, 30% of which is waste in the form of unnecessary tests and unnecessary treatments. Conflicts of interest are rampant, with 94% of doctors reporting an affiliation with a pharmaceutical or device manufacturing company, and many more insidious influences including salaries being tied to “productivity”. Dozens of studies have shown that these conflicts of interest have a real impact on care, and are a major driver of excessive cost and avoidable harm.

On my recent book tour, I discovered an even bigger problem than the cost of care. There is a rampant and growing epidemic that we seldom discuss—the epidemic of fear. It’s understandable why patients are scared when they come to us. They’re not feeling well. They’re scared of what might happen.

But there’s another layer of fear, one that begins and ends with trust. When my mother was diagnosed with metastatic cancer, it took her months to find an oncologist she liked. One day, while trying to locate his office number online, she found a listing for him as a highly-paid consultant and speaker for a drug--the same chemotherapy drug that he’d put her on. This might have still been the right treatment for her, but it made her wonder, and it made her scared.

Traditionally, medicine has maintained a certain mystique. While there has always been information asymmetry, patients and doctors established longstanding relationships, and patients trusted that doctors had their best interests at heart. However, today’s medical landscape is very different. Few patients have longstanding relationships with their doctors. They have little to go on when deciding who to trust with their health, then are kept in the dark on matters ranging from cost of care to doctors’ motivations to necessity of tests and treatments.

In a time when they are already vulnerable and scared, patients have become even more afraid that they may not be receiving the right care for the right reasons. Doctors, too, have become afraid of their patients; much has been written about the fear of malpractice leading to hiding mistakes and practicing defensive medicine.

This mutual fear has led to distrust, disconnection and poor medical care. The driver of fear is secrecy and shame, and the antidote is honesty and transparency. Doctors are public servants whose duty is to be accountable to our patients. We need to break through the barrier of fear by sharing with our patients and the public who we are.

This is why I'm starting a new campaign, “Who’s My Doctor? The Total Transparency Manifesto.” Participating doctors produce a voluntary, public disclosure statement that includes the following: revenue streams of all payments, salary contribution and how salary is determined (i.e. hourly, RVU system, incentive/bonus), paid and unpaid board membership, investments, volunteer activities, professional interests, hobbies, and philosophy of practice.

Doctors already disclose much of this information when they apply for jobs and when they submit to medical journals. So why shouldn’t this information also be available to the public? Our patients have a right to know what influences their doctors may have that affect their care. It holds doctors accountable to our patients while at the same time humanizing us and reinforcing our role as socially responsible public servants.

Many patients may well decide that this information is irrelevant and never look at it. However, it should be available in a public, easily searchable database for those who do think it matters. Patients then have the option of identifying a doctor whose philosophies match their own. They can also help to encourage their doctor to participate in this project. 

Many doctors may have qualms about their information being available in such a public forum. However, in the era of Google and social media, much of this information can already be found online, and having a voluntary disclosure gives more control to the doctor. Also, experience with other transparency pilots such as Open Notes has demonstrated that openness leads to better communication, more trust, and better care, and it only follows that a more open relationship with our patients leads to less fear and less malpractice.

I believe that this form of radical transparency is paradigm changing. It is changing the culture of medicine from one of secrecy and mystery to one that is totally open to patients. It is a public demonstration that patient interests are primary, that reaffirms the reasons why each of us went into medicine. Every time I tell my patient about my decision to be a totally transparent doctor, every time I share my Total Transparency Manifesto, I are saying, I’m your doctor. I’m looking out for you. I’m free of influence that could affect you. Don't be afraid of me; trust me. I’ll be vulnerable with you.

Over the last few weeks, I’ve been discussing this idea with my colleagues and my patients. So far, I have myself and 10 other doctors who are willing to be totally transparent doctors. I’d love to have doctors of all specialties to participate, to say, I’m doing what I can to restore professionalism and break down the barrier of fear.

I’d love to have you join us. What you need to commit to is to write a Total Transparency Manifesto for the website (full website TBA; see more information and my manifesto on my webpage), tell your patients about it, and share your experience with me and the readers on this blog. How did it make you feel. Scared? Uncomfortable? Defensive? Liberated? And how did your patients respond?

And patients—what do you think? Please post your responses. Over the next few months, I’ll be posting my own experiences as well as the experiences of my fellow transparent doctors and our patients. Please join us in this new mission to counter fear and restore trust.