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Showing posts with label shared decision-making. Show all posts
Showing posts with label shared decision-making. Show all posts

My blog entries have been light over the last month in large part because of significant travel. In between clinical shifts in the ED and co-leading a fantastic cohort of GWU’s Residency Fellowship in Health Policy, I was fortunate to be invited to speak at several conferences in October. Here are some highlights:

In early October, I was honored to keynote the Centra Health Foundation annual gala in Lynchburg, VA to celebrate the work of several hundred volunteers, all of whom were either breast cancer survivors or family members of survivors. The event was moving and powerful; I thought of how proud my mother would be to hear me share her story with so many courageous and inspiring women.

Next was the 12th Annual UC Davis Pre-Health Professions Conference in Davis, CA. Ten years ago, when I was the national president of the American Medical Student Association, I was approached by a student from a community college named Joubin Afshar who told me that he had started a conference for community college students who wanted information about the health professions. I attended the conference then, and was blown away by the drive and passion of these students. Nearly all were first generation college students, and for many, this was their first and only exposure to medical professionals.

Having been such a student myself, I vowed to return whenever possible. Last year and this year, I gave a keynote and led four workshops on leadership in medicine. Nearly 8,000 students attended the conference—many took overnight buses across California and even from the East Coast. It’s remarkable to see the work done by a small group of committed students. I wonder how many health professionals are where they are now because of the work of Joubin and his colleagues. (I also had the opportunity to see a friend and colleague, Dr. Davis Liu: an exceptional leader, thinker, and physician.)

My former Rhodes colleague who is now Chief Resident at Einstein Hospital in Philadelphia, Dr. Gary Huang, invited me to give Grand Rounds to the Departments of Internal Medicine and Emergency Medicine (pictured here with fellow Chief Resident and very kind physician Dr. Carlos Davila). I received many questions on what physician trainees can do to avoid burnout and deliver true patient-centered care. 

No answer I gave could have been as telling as the actions of Dr. Huang. As we were coming down the elevator, a woman in her fifties stopped us to ask directions to a particular surgeon’s office. I watched as Gary helped her figure out the name of the surgeon, led her to identify his location, then navigate her there. So many other people would have simply said, “I don’t know” and implied that it’s not their job to know, but not Gary. He took the time to help this woman in need, going far out of his way to do so. He didn’t do it to impress her or me (and I suspect he and his equally humble and caring wife Sherry would both be embarrassed by this blog post), but because it was the right thing to do. This action speaks volumes about the type of doctor he is, and answers the question that the residents asked: there may be many factors that make us disconnected from our patients, but it is within our abilities to treat patients as people, to value each person’s humanity, and to exemplify basic dignity and respect.

At the Urgent Matters Conference during the American College of Emergency Physicians meeting in Chicago, Dr. Jesse Pines expanded upon these themes. The other presenters (including my former attending at Brigham and now MGH Vice Chair, Dr. Ali Raja) and I spoke about how patient-centeredness and better communication can reduce overtreatment, improve patient safety, and transform care. The response was much better than expected, in no little part due to the amazing tweeting capabilities of one Dr. Seth Trueger (aka @MDAware).

Then it was on to Nijmegen, the Netherlands, where Corine Jansen (pictured), Jennie Grau, and their team organized the first-ever listening conference in healthcare. Initially, when my husband heard that I was speaking at listening conference, he laughed—isn’t it an oxymoron? And I have to say that I didn’t initially understand what a listening conference was really about (though the International Listening Association has a long history of hosting these conferences, and cosponsored this one).

The moment I showed up, though, I got it. Patients, family members, doctors, nurses—they shared their stories. They were powerful and unforgettable; indeed, as one participant commented, “the shortest distance between people is a story.” I heard a doctor speak about how he and his fellow neurologists assumed that their patients with Parkinson’s disease cared most about memory and managing their tremors. But when they listened—really listened—to their patients, they heard that what mattered most to them was sleep and sex. So they changed the entire medical encounter so that it wasn’t just about medication management, but also hired a sex and sleep therapist. Corine, Jennie, your team at REShape (where I took the photo with the best message ever): hats off to you for a fantastic conference and to the tremendous individuals I had the pleasure of meeting there.

This week, it is off to Grantmakers in Health Conference in DC then American Cancer Society in San Jose, CA. I hope to contribute more substantive blog posts soon; please write if there are particular topics you would like to see.

Using checklists in medical care sounds like common sense. We’ve all heard the stories of the man who had the wrong leg operated on, and the woman who had a sponge left in her belly. Checklists are routine in other professions to standardize management, and we know they can prevent hospital infections and surgical error.

But can there be a downside to checklist medical care? Consider these two examples:

Scenario 1
You come into the ER after you dove to catch a softball. You’re pretty sure you have a bruised rib, but because you said the magic words of “chest pain”, you get whisked away to get blood drawn and then to get an EKG and a chest x-ray. You’re told this is all part of the “chest pain protocol”. But did you really need all of these tests done?

Scenario 2
You tell your doctor you’re tired and feeling run down. Your doctor does “routine blood work”, again following a checklist of things to look through: anemia, thyroid problems, and so forth. Everything is “normal”. The checklist is complete, so your doctor assures you that you’re OK—even though you know you’re not.

In my work as an emergency physician, I know that checklists can be helpful. They ensure complex procedures are done thoroughly and provide an extra assurance for safety. However, before undergoing the procedure or any treatment, you must first have a diagnosis. This diagnosis, and the subsequent treatment, needs to be personalized to you. A “cookbook” approach where you get the same recipe of tests and medications as anyone else will result in expensive, unnecessary care, and even misdiagnoses and harm.


Here are five tips to make sure you get the best, personalized care for you:

#1. Insist on telling your story. Studies have shown that 80% of all diagnoses can be made based just based on the story of your illness. Doctors have limited time to listen to your story, so you must make sure your doctor understands why you’re there. Don’t just say that you have “chest pain”; explain when it started, what you were doing, and how it felt. Write down key elements. Practice until you can tell it in 30 seconds or less. Then tell it to your doctor the moment you see her to make sure the doctor focuses on your individualized story.

#2. Give open-ended responses to close-ended questions. If you suspect that the doctor is going through a checklist of yes/no questions, try to get her to focus on you by adding personal elements to your answers. If you’re asked, “when did you start feeling so tired?”, don’t just say “two weeks ago.” Add that you’re normally very energetic and run 5 miles a day, but for the last two weeks, you can barely get out of bed to work. These answers help provide context to who you are.

#3. Ask about your diagnosis before you consent to tests. If you’re told you need to get blood drawn, ask why. Sometimes, that’s enough to stop the “cookbook” from taking over. Every test should be done for a specific reason, not just because it’s what’s done in this protocol, but because it helps focus the diagnosis. Also ask about what to do if the tests are negative. Just because they’re negative doesn't mean there isn’t anything wrong, so what should be next steps?

#4. Inquire about treatment options. In very few situations is there only one test that could work or one protocol that must be followed. If your doctor says you need to do this one set of tests, ask what your other options are. Often, watchful waiting is a perfectly acceptable alternative. Discussing options helps to remind your doctor to tailor the treatment to you.

#5. Let your doctor know that you want to be a partner in your decision-making. If you still think that your doctor is following a recipe rather than individualizing care, ask her to explain her thought process to you. Say that you respect her expertise, and you want to learn what it is that she is thinking. Your doctor may be so busy or so used to checklists that your request can help her to refocus on you and your individual needs.

This article was previously published in Women's Health Magazine (posted here with their permission).

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.

What’s wrong with the following picture?

Two medical researchers at a major academic center collaborate to study disease X. They come up with the research question, design the project, obtain grants, and collect data. Their results are published in a scientific journal and presented at several medical conferences. Based on this first study, the researchers start another cycle of idea generation, data generation, and publication.

I presented this scenario to three Harvard medical students working with me in the ER. They all looked at me blankly. “I don’t get it,” one of them said. “Isn’t this the way research is done?”

That’s exactly the problem. This is “traditional” research, and traditional research leaves out one critical stakeholder: the patient. 

A few weeks ago, I had the honor of participating as a member of PCORI’s inaugural advisory panel on patient engagement. PCORI is the Patient-Centered Outcomes Research Institute, and is a new federal institute mandated to figure out how to meaningfully involve patients in research.

Some may argue with the necessity of such an institute. After all, isn’t research ultimately done to help patients? While grants and publications advance careers, few researchers go into such grueling fields to make money or gain fame. Isn’t research already serving the public good, which by definition is patient-centered?

But here’s another way to think about it. In “traditional” research, patients are subjects. Their sole purpose is to participate in research trials, and the extent of their decision-making is confined to whether to participate in the trial (let’s set aside, for now, the many throughout history who were subject to research against their will). Very rarely, if ever, do patients participate in the research design, data analysis, or result dissemination. Very rarely, if ever, do patients initiate the research and envision the research question itself.

Yet isn’t it the patient—the one with the disease—the most knowledgeable about what needs to be studied and how? No doubt, the researcher has irreplaceable expertise; but isn’t the patient also a vital partner in the process?

In this era of healthcare reform where the patient is finally recognized as a necessary stakeholder, the creation of PCORI is an attempt to shift the paradigm of how medical research is done. Rather than having patients as invisible, nameless subjects, PCORI requires them to be involved in the research design from the very beginning. Patients are expected to be equal partners in deciding what projects to fund and figuring out how to design studies with a patient-centered focus. They are expected to help figure out what’s important to study, and how to get out the results beyond the realms of scientific meetings and medical journals.

Much about this “new” concept of medical research is common sense. Most would agree that precious time and tax dollars should be devoted to what really matters to people. Yet, this paradigm shift is such a departure from traditional research that it is not without its doubters. Researchers not used to involving patients question whether they would be sophisticated enough to understand the research process. Patients, too, doubt whether they have the expertise required. Fueling this is mutual mistrust: will this new patient-centered approach derail existing research? Will patients end up being “used” for some nefarious ulterior motive?

As part of PCORI’s outreach efforts, it solicited applications for 4 advisory panels. Over 1,000 people applied—many of whom are representatives of patients and patient groups. Twenty-one of us were selected for the advisory panel on patient engagement, and met over two days in Washington D.C.

While many of us are optimistic and excited about the potential of PCORI, we also raised several questions, including:  

* How can researchers switch their mentality to become patient-centered such that they are not just simply checking a box to affirm that yes, patients are involved?

* How can PCORI itself ensure that it adheres to its goal of “research done differently” and go really tackle the concept of patient-centeredness?

* While it is admirable that PCORI has taken great strides to involve many patient advocacy groups, these groups represent only a small portion of patients. How can PCORI go beyond hearing the loudest voices—many of whom may also have their own motives—and really engage people?

* How will PCORI address issues neglected in traditional research that are vital to our healthcare, such as preventive medicine?

* How will PCORI really engage people around the country to come up with research questions and redirect priorities?

Recognizing that there is a fundamental problem with the traditional conduct of research is a critical first step to making change. PCORI has opened a door that’s been shut for far too long. It is now up to all of us—as physicians, researcher, and most of all, as patients—to ensure that medical research, and medical care, focuses on and originates from the patient.

In my last post, you met Catherine, a young woman who came down with a stomach bug but was ushered through numerous blood tests and a CT scan, only to be even more confused than ever. You saw how shared decision-making needs to begin with the process of establishing a partnership for shared diagnosis, because diagnosis is the first and most critical step to your medical care.

Here are 5 steps to partner for your diagnosis:

#1. Find a physician who agrees with shared decision-making for diagnosis. Your doctor should listen to you, care about you, and feel comfortable—even seek out—involving you as a partner in the decision-making process. You will quickly see whether your doctor gives lip service to the partnership or really believes in it. Someone who really believes in it will work with you and welcome and actively solicit your suggestions. Someone who isn’t will quickly exhibit signs of impatience and defensiveness. If you are always respectful while asking questions, your doctor should welcome the input rather than feel challenged by it.

#2. Express your intentions to your doctor. Doctors aren’t mind readers, and are probably conditioned to patients being passive participants in their healthcare. No matter if this is a new doctor, or one that you’ve had a relationship with for a while, state clearly at the beginning of your visit that you want to be involved as a partner in your own decision-making process. Ask to share in your doctor’s thought process about your diagnosis. Inquire about what it is he/thinks you have. Say that you want to be involved in figuring out what you have and what to do. If your doctor does not respond positively, perhaps it is time to look for another care provider.

#3. Help your doctor help you. Most diagnoses can be made by the story—the history of your illness—alone. Yet, one of the most frequent complaints patients have is that their doctors don’t listen to them. No doubt, there are limitations and pressures on the doctor’s time, but neglecting to listen to you will result in misdiagnoses. You can help make sure your doctor listens to you by telling agood story. Rehearse it in advance and make sure you tell a concise version. Begin at the beginning and proceed chronologically. Provide context, such as how it affected your life. Use your own voice instead of what you think is medical jargon. Write down key details so you don’t forget, and practice the delivery. Knowing how to convey your story effectively is a key part to helping your doctor help you get to the right diagnosis.

#4. Make sure you understand every test that is ordered. Every test should be done for a specific reason. Study after study shows that there is no role for the “screening” test: doing “basic labs” or a “screening CT” is like fingerprinting the entire city to search for a suspect, because it’s ineffective and likely to end up with confusing results. Not to mention that every test, even the basic blood draw, has potential harms (a CT has many more potential harms, including increasing your lifetime risk of cancer). If your doctor asks for lab work to be done, ask what blood work is requested and why. If your doctor asks for a CT scan, x-ray, MRI, etc, ask what it is looking for. How is the test going to change your management? Is it necessary? What are the possible harms? What are the alternatives? These are the same questions you would ask if you were deciding whether to treat and how to treat your illness, and making the diagnosis should be no different.

#5. Make decisions together, always with the diagnosis in mind. A test or procedure should be done only if it helps make your diagnosis; otherwise, what’s the purpose? The treatment should be targeted to the diagnosis; otherwise, what is it being done for? Perhaps there are two or three possible diagnoses; what is going to be done to try to narrow this down? What’s the natural course of the illness; what should you expect and what can you do to start feeling better? You need to be proactive in thinking through and asking questions, and if you have a willing physician (as you should), you should have all of your questions answered. Keep asking if your diagnosis does not make sense to you.

A critical component of shared decision-making is to work with your doctor to figure out your diagnosis. Focusing on this first, key part of your care will have transformative effects on your health.

Imagine, how different would it have been if Catherine were involved in the very beginning with her diagnosis. She would have been able to tell her story and ensure her doctors listened, which could have led to the diagnosis without any tests at all. She would have avoided an unnecessary CT scan and unnecessary blood work, along with the all the potential harms and confusion of the tests. She would have received her diagnosis and understood what it is and how to treat it. She would have gone home, reassured and feeling better.

You may be dissatisfied and frustrated by the way your medical care is today, but there is a way to make it better. You hold the key to transforming your health. Try it on your next doctor’s visit, and focus on shared decision-making towards making your diagnosis.

Tried it? Have suggestions? I welcome your comments!
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Catherine Smith is a 39-year old woman who is confused, scared, and feeling terrible. She is generally pretty healthy and active, but this morning, she woke up feeling queasy. Throughout the day, she began throwing up and having diarrhea. She wasn’t keeping anything down, so her husband convinced her to go to the local ER to get checked out.

In the ER, she had an IV placed and blood drawn. A nurse and then a doctor asked her some questions. She was told she had to drink some thick white liquid. A couple of hours later, she felt better. She could go home, right?

No, she was told; she was getting a CT scan. Nobody told her this earlier, but OK, she reasoned, she has to trust the doctor; isn’t that why she came here?

So she dutifully got into a donut-shaped machine. A couple of hours later, she was told that the test was “negative”: she didn’t have appendicitis or gallstones. Of course not—she had her appendix and gallbladder removed years ago!

“Good news,” the doctors said to her. “We have “ruled out’ the worrisome things. You can go home!”

But Catherine didn’t understand. Why did she get so sick in the first place? What was the point of the tests? She was feeling nauseous again—was this going to keep happening? Is she going to be OK?

**
I’m an emergency physician, and Catherine was my patient. Actually, I see patients like Catherine every day, patients who are confused about what’s going on and dissatisfied with their medical care. We in the U.S. believe that we have the best medical care system in the world, yet our healthcare consumers are more unhappy than ever. Patients don’t feel like their doctors listen to them or take their concerns seriously. They are subject to endless tests, but, at the end of the day, still have no idea what they have or how to get better. They keep being told that they need to be "empowered patients", but are not involved as an equal partner in their care.

The shared decision-making movement is gaining much-needed momentum and traction. I applaud it whole-heartedly. Yet, the movement so far has focused on shared-decision for treatment. Don’t get me wrong; it’s very important for patients to share in the decisions about weighing chemotherapy agents versus surgery for cancer, deciding between lifestyle changes and starting medications for high cholesterol, and so forth. What I argue is that patients have to be involved in an even earlier and more fundamental part of the decision-making process: the diagnosis.

Why is the diagnosis so important? First, it’s important for you to know what you have before you can treat it. You have to know what disease or process you have so you know what to expect, what to watch out for, and what you can do about it. Throwing medications at symptoms just masks them, but doesn’t get at the root of the problem. Second, not knowing what diagnoses are being considered is equivalent to searching for a needle in the haystack: it’s aimless and dangerous. Tests should be done to narrow down diagnoses, or else results are going to be obtained that don’t make sense, and you still won’t know what you have—like Catherine.

Wait a minute, you might be saying. Isn’t it the doctor’s job to figure out the diagnosis? How can patients possibly help in this process, if you are not the ones with the medical training? My patients are surprised when I tell them that, actually, they are key to their diagnosis. At first, they don’t believe me. With time, they understand what I mean that only you can convey to your doctor the symptoms you’re having and the story of your illness. Only you can help your doctors narrow down the possibilities and arrive at the answer. Only you can be sure that your doctor listens to you and focuses on getting you to your diagnosis. Only you can really advocate for your healthcare.

I go as far as to tell my patients to never leave their doctor’s office without getting a diagnosis. It doesn’t have to be the final, 100% definitive diagnosis; after all, it’s very rare to be 100% sure of the exact cause of each and every illness. Catherine probably had a stomach bug—a simple viral illness. Am I 100% sure it can’t be something else, like food poisoning? No, but nor do I have to be 100% sure, because the management and the expected course of her illness will not change. And with every symptom, there are the “scary” things to watch out for, in this case, things like ectopic pregnancy or ovarian problems.

It’s important to consider these scary causes, but “ruling out” problems should not be the only goal. In fact, the goal should be to arrive at a most likely diagnosis. This is what will aid you in guiding your decision-making and your thinking about what tests, if any, are needed. This is what will inform your understanding, your questions, your treatment, and your follow-up.

It is critical that you work with your doctor to make sure you are an equal partner in the process of getting to your diagnosis. My next post will address what, exactly, you should do to engage in this key first step to shared decision-making. In the meantime, I welcome your comments, and also invite you to visit the website for my forthcoming book, When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests.