If you’re like me, you look it up. Not just to sift through the information to make sure the doctor is right, but also to inform myself. The more I know, the more easily I can conduct educated conversations with physicians about my diagnosis or treatment plan. I do not want to leave everything up to any clinician, as passive patients do not experience the best outcomes in care.
Becoming informed about a proposed diagnosis or recommended treatment (if it makes sense), the more invested and committed I become to following through on my doctor’s advice.
Of course, it can very well work the other way too. If I doubt the diagnosis because something doesn’t add up, I do my research. For example, if I’m given a diagnosis, I research the symptoms and if a couple of the top five don’t apply, I do more research and then obtain a second opinion from a qualified specialist.
Where do most patients go for health/medical information? Mr. Google is fine if you can wade through information that isn’t credible to find the good stuff. That means that you’ll most likely come across inaccurate information and possibly scary stories that just aren’t based on fact or evidence.
How many patients do you know who are able to bypass the unreliable on Google to find trustworthy information? I bet you can count them on one hand. To be fair, I’ve hurled myself onto Google with my symptoms and scared myself half to death.
I try not to sound like I’m preaching when I encourage patients and families to research an illness, condition or treatment on medical academy or medical society websites, disease organizations, medical school websites, certain government websites, or certain online patient communities.
I came across a new health/medical search engine for patients called MedNexus. Actually, Nathanael Geman, co-founder and CEO of MedNexus contacted me. I rarely write about health/medical companies that reach out to me in hopes that I will spread the word about them. This one was different. I did a couple of test runs on the website and found that the site was easy to navigate and that credible information came up in a condensed, easy-to-read fashion.
Through MedNexus you can find the most “relevant content from a variety of courses such as medical journals, government health sites, patient forums and more.”
Check it out and see what you think. MedNexus is still a work in progress and they claim to be happy to receive your feedback. www.MedNexus.io
In writing about MedNexus, I was not compensated in any way. Honestly, I think this site could be very helpful to patients and families.
The article in The New York Times, Document Claims Drug Makers Deceived a Top Medical Journal, is curious indeed. The question was asked—did two major pharmaceutical companies mislead editors at The New England Journal of Medicine by omitting data about the stroke-prevention drug Xarelto?
Patients and families are suing Johnson & Johnson and Bayer over the safety of the anti-clotting drug, Xarelto (rivaroxaban.) The lawsuit, filed by 5,000 patients and families, claims they were harmed by Xarelto. 500 of the 5,000 involved patient deaths.
Xarelto is a top competitor in stroke-prevention drugs. Warfarin is the older blood-thinning drug, considered the standard for treatment of atrial fibrillation.
Here’s where the interesting part begins. Johnson & Johnson and Bayer hired The Duke Clinical Research Institute to run a 3-year clinical trial that involved more than 14,000 patients. This trial led to the approval of Xarelto by the FDA.
The clinical trial compared bleeding events and the number of strokes experienced by patients taking Xarelto to the bleeding events in patients taking warfarin. Xarelto proved to be superior to warfarin, according to Duke Medicine News, Major Study Shows Ability of New Agent to Prevent Strokes in Patients with Atrial Fibrillation.
The accusation from patients is about a faulty blood testing device used in the study which may have led doctors to give them the wrong dose of warfarin, which in turn could have boosted Xarelto’s results over warfarin.
Duke researchers published an analysis in the NEJM and concluded that the device problems did not change the study’s results. Duke researchers also claimed that it conducted its research independently of Johnson & Johnson.
In light of the lawsuit by 5,000 patients and accusations that the data from the study was not accurate, and the fact that Johnson & Johnson and Duke researchers maintain that Xarelto is superior to warfarin, I decided to dig a little further to see if there was any connection between Johnson & Johnson and Duke University.
Indeed there is.
A. Eugene Washington is president of Duke University Health System and is also on the board of Johnson & Johnson. Washington left the position of dean of the David Geffen School of Medicine and CEO of the UCLA Health System in the midst of a conflict of interest scandal.
Guess what that conflict of interest scandal was about?
Dr. Eugene Washington was paid $260,000 last year by none other than Johnson & Johnson. Washington is their company director and is currently on their board of directors. See article, Duke University Hires New Medical leader from UCLA, for further information on the scandal.
There is more.
Guess who is the newly appointed commissioner of the FDA, the very regulatory agency that approves drugs to be sold in the United States? Dr. Robert M. Califf, MD who is the past president and vice chancellor for clinical transitional research at Duke University. He also served as director of the Duke Translational Medicine Institute and was founding director of the Duke Clinical Research Institute.
Duke Translational Medicine Institute: “Duke Translational Medicine Institute strives to overcome the obstacles to developing discoveries into devices, drugs, or therapies to improve health. Sometimes those obstacles are financial – finding funds to pay for proof-of-concept testing.” See link here.
Duke Clinical Research Institute: “As part of the Duke University School of Medicine, the Duke Clinical Research Institute is known for conducting groundbreaking multinational clinical trials, managing major national patient registries, and performing landmark outcomes research. The DCRI also is home to the Duke Databank for Cardiovascular Diseases, the largest and oldest institutional cardiovascular database in the world, which continues to inform clinical decision-making 40 years after its founding.” See link here .
There’s more to this story, I’m sure of it.
What do you think? Is there a conflict of interest in any of this? Do you see some connections that could be questionable? Who might be benefiting from the approval of Xarelto besides the pharmaceutical companies?
I welcome your comments.
The Patient’s Toolkit was developed to help you actively participate in care and engage with your doctors and nurses with more confidence. You can download the toolkit here. It is free.
The Patient’s Toolkit includes several forms, checklists and sample questions to guide you through key points in your medical care. It is a companion piece to my award-winning book, The Take-Charge Patient.
Your medical care is a team effort and you are a very important part of the process. To increase the quality and safety of your care, these easy-to-use aids allow you to maximize the time with your medical providers and assist you to become more informed.
Many patients and their advocate families do not know how to navigate our healthcare system, how to ask questions or which questions to ask, how to track symptoms to support a physician’s efforts to arrive at an accurate diagnosis, make the most of precious minutes with a doctor, and prevent medical errors.
The Patient’s Toolkit is your personal guide. It includes a medical ID card that you can fill out and slip into your wallet so you have it with you at all times so you don’t have to depend on your smart phone or other electronic device. You can download the Patient’s Toolkit here. If you are actively involved in your care and become informed about your diagnosis and treatment plan, you will experience increased safety and better quality care.
Ask questions if you do not understand something your doctor or nurse explains to you. Medical information can be complex and it’s foreign to most. Use The Patient’s Toolkit to document information about your diagnosis, treatment, next steps and when to follow up with your medical provider. Being prepared will increase your self-confidence and maximize the time you have with your medical provider.
I look forward to hearing from you about your success with your new Patient’s Toolkit. Your suggestions are welcomed.
For for information on The Take-Charge Patient: How You Can Get the Best Medical Care, please visit www.thetakechargepatient.com
I just got off the phone with a good friend who’s been struggling with some medical issues. I heard the defeat in her voice right away when I asked how she’d been doing.
Susan mentioned that she’d seen her gastroenterologist the previous week. “Dr. Snark was irritated with me.”
I’d heard this before about Dr. Snark and not just from Susan. But now she was more vulnerable, less able to shake it off. She’d had gastrointestinal problems for the last year and hadn’t been feeling well. Plus, she’d been given some potentially frightening news about plaque in her arteries. In her mid seventies and a widow, she didn’t need a doctor to disrespect her.
The phone to my ear, I said, “What do you mean he was irritated? What happened?”
“I was describing my symptoms and he cut me off and told me to stick to the point. And not in a nice way either. He was obviously very irritated.”
“That’s not okay,” I said, picturing Dr. Snark, the head of gastroenterology at a teaching hospital, treating Susan like that. I’d encountered his unpleasant manner myself once.
Susan continued. “He also said I had so many things wrong with me, so many medical issues to deal with.” She sighed. “It just made me feel bad.”
“Must have made you feel kind of like giving up,” I said. “If your own doctor can’t handle your medical issues, who can?”
“Yes, exactly,” she said, waking up. Just being validated made her feel like less of a source of dissatisfaction to her doctor. “That’s exactly how I felt. I came home and I guess I’ve been here ever since.”
Some doctors just don’t realize the effect they have on patients. You can make all the excuses you want about them being pressed for time, how healthcare hasn’t been kind to most doctors in the last few years, how non-compliant patients feed their frustration, and more. But there’s no excuse for a patient leaving a doctor’s office with her hope in the palm of her hands.
Recently, Susan had been told that plaque in her arteries was causing her leg pain. Susan is astute enough to know that blockages can cause heart attacks and strokes. She’d begun a fairly rigorous walking regime, which her internist advised her to do in effort to avert major surgery. According to Susan, her internist had said that walking might help to get the blood moving in her legs.
But that news had caused her to feel more vulnerable, old. She didn’t need a gastroenterologist to make her feel worse.
“Did you say anything to Dr. Snark? “
Feeling protective of my friend, I wanted to hear that she told him to F*off. Part of my anger, I’m sure, was due to having been in a similar position with a couple of arrogant doctors four years ago. I’d had severe, chronic, lower abdominal pain for 16 months and saw 11 physicians in effort to get an accurate diagnosis and treatment plan.
Most of the physicians I saw tried their best and sincerely wanted to help me. But two doctors didn’t and wrote me off as a difficult patient. 10 misdiagnoses later, I found my own diagnosis in a New York Times article and the surgeon and hernia specialist to heal me. She did the appropriate tests, performed three-hour surgery to repair the muscle tear at my C-section site that had nerves pinched in the holes and an inguinal hernia with nerve involvement as well. Thanks to her, I’ve been pain free for over four years. And I don’t take being pain free lightly after what I went through. I am immensely grateful to her.
Susan exhaled and I could envision her shoulders falling forward. “No, I kept quiet.”
“I hope you never go back to him,” I said, probably a little more forcefully than I should. “You shouldn’t be treated that way. Besides,” I added, “You know how he over-tests to make more money.”
Susan managed a weak laugh. “He wants me to have an endoscopy every year.”
“Is that because of the pre-cancerous condition in your throat? Something connected to GERD?” I’d asked her before for the name of the diagnosis but never heard it in a clear way.
Susan tried to wave me off. “Oh, I don’t know. Something that could turn cancerous.”
I jumped in with both feet. “I think you need a second opinion on the diagnosis Dr. Snark gave you about your throat and the pre-cancerous condition. Besides, a good relationship between you and your doctor is essential for good care. You have to feel comfortable with your doctor and you don’t with Snark.”
“True,” Susan said. “My internist recommended that I ask Dr. Snark for a breath test because of the ongoing diarrhea, nausea and bloating.” She paused. “You know how long I’ve been dealing with this.”
“Yes, longer than I did.” My gastroenterologist ordered several tests and a breath test. I tested positive for bacterial overgrowth and after the medication, I feel better than I have in a long time.
“Dr. Snark refused to give me a breath test.”
“He said I had one in 2009 and it was negative.”
“But it’s 2016.” I was winding up, anger fueling my words. “Did you explain to him that your internist recommended a breath test?”
“Yes, I told him. He wants to do another endoscopy.”
I exhaled sharply. I wondered if Dr. Snark denied the breath test because he makes less money since that test is done at the hospital and the endoscopy is done in the surgery center that he owns. I kept my thoughts to myself.
Her voice wavering, Susan said, “I don’t want another endoscopy right now. Something about it just doesn’t feel right. Seems like I just had one.”
“Listen,” I said as adrenalin lit my brain. “Here’s the name and phone number of my gastroenterologist. At least see him for your current symptoms and get a second opinion on your throat thing.” As we spoke, I emailed her his contact information and link to his website.
And then something occurred to me. “Who gave you the diagnosis of the blockage in your legs?” Once again I wished that Susan would share the exact diagnoses given by her doctors. Maybe she was afraid that I would research them and find out they were worse than she’d thought.
“Did you recently get imaging tests done?”
“No, only the full body scan from two or three years ago that the cardiologist ordered.”
“Did your internist have the imaging tests there with her when you saw her?”
“No, just the report from the cardiologist.”
I asked, “Did that report specifically say you had blockage in the arteries in your legs? I don’t remember you mentioning that when you had that full body scan. But it’s been a while.“
Susan was silent on the other end. “I don’t know.”
Did she have the right diagnosis? At least 5 percent of outpatients experience diagnostic errors, and I suspect that percentage is very low. I suggested that Susan go back to the cardiologist for the pain in her legs. I repeated the importance of seeing a new gastroenterologist for her current gastrointestinal symptoms and for a second opinion on the throat/GERD issue.
Susan perked up. “You know, as we’re talking I’m beginning to see things a little more clearly. I haven’t been feeling well and I just am not on top of things. I just took what Dr. Snark said to heart and that was it.”
“It happens to everyone,” I said. “Especially if you aren’t feeling well. Let me help you get your records and information together so you’ll be prepared when you see the next two doctors.”
Susan thanked me and said she felt much better. Patients most always feel better when they take some control over their healthcare and become a part of the equation, part of the discussion and decision-making. I emailed her a to-do list and offered to help her create her own packet of health information with symptom diary, medication list, allergies to medications, list of questions for doctors, copies of pertinent medical records, and more.
I wonder how patients with multiple medical conditions or complex cases make it through our fragmented healthcare system alone. Especially if they aren’t feeling well. How does anyone advocate for themselves successfully without becoming overwhelmed or confused?
We all need patient advocates to assist with our doctor visits and hospital stays. We need them to help sift through the quagmire of fragmented care, the lack of communication between doctors, to encourage second opinions, to research diagnoses, medications, treatments and tests. To help us remember what we might have forgotten when clinicians convey complex medical information.
Advocates should be provided and paid for by health insurance. It would certainly help patients and could very well help the bottom line of health insurance companies.
With preventable medical errors taking the lives of 400,000 people a year, and costing our country one trillion dollars annually, don’t you think we need to change something with our system?
Not every patient is able to be an effective self-advocate. Not every patient has someone to help them. Not every patient can or is willing to deal with online patient portals, Health IT, apps, and more. Sometimes it just comes down to the need for a caring human being to help.
When you think of Toyota auto manufacturing, you might not think of healthcare. But in the new short film series, The Toyota Effect, one of these short films does. And the results are impressive.
The first film, Saving Sight, by academy award-nominee Keif Davidson, features the intervention of the Toyota Production System (TPS) with the struggling Harbor-UCLA Medical Center’s eye clinic, which treats the underserved patient community in Southern California. In a moving story, a patient, Liseth, is featured. She is nearly blind and in need of immediate eye surgery. However, she is on a wait list for surgery along with hundreds of other patients who are forced to wait months for treatment. Many go blind in the process.
Harbor-UCLA Medical Center reached out to Toyota for help. They didn’t know what was wrong with their operations but understood that working in chaos had stretched their hospital staff beyond capacity.
With the help of Toyota, Harbor-UCLA was able to streamline the efficiency of their operating system and enlist the support of hospital employees as problem solvers. With simple steps such as color-coding their system, they are now treating patients with urgent needs more quickly. Liseth had her eye surgery and has recovered her sight. The hospital’s wait list has now been eliminated.
The second film of The Toyota Effect, entitled 116 Innovators by award-winning director Steve James, is about the Chicago company, ACE Metal Crafts, a U.S. steel manufacturing company that grew so quickly that its capacity was completely outpaced by growth. The CEO of the company, Jean Pitzo, reached out to Toyota for help. With the assistance of TPS, chaos was quickly replaced by employees working in collaboration. Production time was shortened by several weeks. ACE Metal Crafts was able to satisfy more customers and become more competative in the marketplace.
In the film, Pitzo explained that TPS taught her that the leaders of a company disrespect their employees when the system isn’t flowing efficiently. In partnership with TPS, Pitzo and her staff streamlined the operations, thereby increasing employee satisfaction and motivation.
Imagine if Toyota Production System were to partner with our major hospitals in the U.S. to streamline their operations and to help their doctors and nurses feel more valued and respected.
Initially, clinicians and hospital administrators might be apprehensive about TPS intervening. They might be hesitant to welcome a large company to come in and identify problems and offer solutions. But if you consider the 210,000-440,000 people who die from preventable medical errors every year, maybe it’s time they consider some outside help.
Staff from TPS reports a commitment to zero job loss for employees of organizations they work with. They claim to focus on people, on supporting them in their jobs. As a result, employees experience increased personal investment in their work.
According to a 2011 American Nurses Association survey, three out of four nurses reported feeling stressed and burned out. The ANA attributed problems of fatigue and burnout to a chronic nursing shortage.
46 percent of physicians reported feeling burnout, according to a Medscape Physician Lifestyle report.
Imagine if TPS were to work with hospitals with the highest rates of burnout among their clinicians and employ their successful strategies. Isn’t it possible that we’d have fewer preventable medical errors? If employees were trained to work together in teams, to collaborate with one another, and even to contribute ideas to solve problems, isn’t it possible that quality of care and patient safety would be greatly improved?
According to the World Health Organization, effective teamwork in healthcare can have an immediate and positive impact on patient safety.
Because TPS is a process-oriented approach, it can be applied to any hospital or healthcare organization. This approach involves taking an objective view of the internal process of an organization, analyzing workflow, and implementing small steps to fix deep, underlying problems.
Preventable medical errors are tragic examples of our dysfunctional healthcare system. The U.S. healthcare system is rated 37th in the world, and that’s behind Costa Rica and Slovenia. Healthcare spending hit 3.1 trillion in 2014. According to the CommonWealth Fund, U.S. healthcare is the most expensive in the world and yet underperforms relative to other countries on most dimensions of performance.
Maybe it’s time we look to Toyota Production System and ask for help with developing a “lean” healthcare system in the U.S.
To view The Toyota Effect short films see here.
I welcome your comments.
If you weren’t aware of the prevalence and severity of diagnostic errors, (misdiagnosis, missed diagnosis, delayed diagnosis) you might be now.
The Institute of Medicine (IOM ) released a new report called, Improving Diagnosis in Health Care. The report cited that most people will experience one or more diagnostic errors over their lifetimes. It also revealed that diagnostic errors contribute to 10 percent of patient deaths and account for up to 17 percent of hospital adverse events. But because of a scarcity of reporting and research on diagnostic errors, those numbers might be very conservative.
According to Mark Graber, MD, president of The Society to Improve Diagnosis in Medicine, diagnosis is wrong 10-15 percent of the time.
It happened to me. 10 times to be exact. During a 16-month long, severe chronic pain condition, I received 10 misdiagnoses from 11 physicians with different specializations. Along with the 10 misdiagnoses came 15 procedures and tests. Luckily, I found my own diagnosis in a New York Times article, In Women, Hernias May Be Hidden Agony
The surgeon and hernia specialist featured in the article, Shirin Towfigh, MD, diagnosed me correctly. She performed 3-hour surgery to repair a muscle tear in my C-section site and an inguinal hernia with a nerve pinched in the hole. I’ve been pain free for over 4 years and I am very grateful to her.
Some aren’t so lucky. Take Rory Staunton who was misdiagnosed in the ER with an upset stomach and dehydration. He died from severe septic shock brought on by a bacterial infection. There are countless others whose cancer or heart attacks were completely missed or misdiagnosed as innocuous ailments.
Arriving at a diagnosis can be an allusive process, not always easily uncovered through physical exams or tests. What contributes to misdiagnoses or missed diagnoses? See the Society to Improve Diagnosis website for causes.
The IOM report produced a number of recommendations for clinicians and insurers to improve diagnosis. It also emphasized patient and family collaboration with doctors. Since patients and their loved ones are such an important part of the diagnostic process, it’s essential that you know what you can do to help improve your chances of receiving an accurate diagnosis.
Here is where you come in.
As a patient, you are in partnership with your doctor. To be an effective team player you need to be an active participant in your care, not simply a passive recipient. If you aren’t feeling well enough to be proactive and form a mutual collaboration with your doctor, ask a loved one to assist. For more information on how to do this, please see my book, The Take-Charge Patient.
Free Patient’s Toolkit see here http://thetakechargepatient.com/patient-tool-kit.html You do not have to input any personal information for the free download.
Tips to Help Ensure an Accurate Diagnosis
- Before you see your doctor, create a symptom diary. Document your symptoms in a notebook, on your smart phone or other electronic device. Answer these questions:
- What are your symptoms?
- Where are they located?
- What makes your symptoms worse or better, such as exercise or eating a meal?
- Time of day your symptoms are better or worse?
- What you have tried to alleviate your symptoms? Did they help or not?
- If pain accompanies your symptoms or pain is the symptom, track it. On a scale of 1-10, 10 being the worst, document it every day.
- Bring your symptom diary with you to see your doctor and enter into a dialogue with him/her.
List of Questions Before You See Your Doctor
Create a list of questions before you see your doctor. This allows you to think about what you need to focus on. Document the answers and pieces of the conversation you believe are important.
You Are Given a New Diagnosis
If you are given a new diagnosis from your doctor, consider asking these questions:
- What is my diagnosis and what does it mean?
- Are there any other possible diagnoses for my symptoms?
- How did you arrive at this diagnosis? I.e.: test results, physical exam, radiology report, etc.
- What is my treatment plan?
- When do I follow up with you about my treatment plan?
If You Suspect a Misdiagnosis
If your treatment is not helping your symptoms, discuss it with your doctor. It’s possible that there is an alternative treatment that might work better for you.
- Ask your doctor if it’s possible that you might have a different diagnosis.
- Work with your doctor.
Ask That Tests Be Repeated or Read by a Different Clinician
Tests can be wrong or they can be read incorrectly. Ask that tests be done a second time or read by another doctor. Many doctors read reports given to them by radiologists regarding any imaging studies you’ve had. Ask that your doctor or another doctor read those tests.
Get Copies of your Medical Records
Obtain copies of your pertinent tests such as MRI, CT scan, X-ray, blood test results, surgery/op report. You should have all of these anyway in a health file at home, but if you don’t, simply make the request. You might have to sign a form or pay a small fee. Bring your own copies of tests to each new doctor you see.
Get a A Second Opinion
Patients are sometimes afraid to get second opinions. Please don’t be. It is your right and should not offend any medical professional.
- Ask a doctor you respect and have confidence in to recommend a specialist.
- Ask an RN or other healthcare professional for a recommendation.
- Ask/email your loved ones, colleagues and any physicians you know for a respected physician to see for a second opinion. You will see some of the same names recommended.
Every Time You See a New Doctor
Bring all the items listed above with you to each and every medical appointment with a new doctor. Take notes while you’re there.
Bring a Loved One with You
It’s not easy for anyone to hear, much less remember correctly, what a doctor says. Especially if you aren’t feeling well. Bring a loved one with you to each appointment with a doctor. Ask that person to take notes. You can review the information with that person at a later time.
Research a Diagnosis
If you are informed about your diagnosis, you will be better prepared to ask questions. To research a diagnosis go to credible websites such as:
- medical school websites.
- medical society or academy websites.
- disease organization websites.
- government websites.
Googling symptoms and diagnoses can easily lead you to inaccurate information and scary stories.
My Patient’s Toolkit is here. http://thetakechargepatient.com/patient-tool-kit.html Free download. You don’t have to input your email address or contact information. It is free to you to use at your leisure.
For more information, please visit www.thetakechargepatient.com