Let me say first that I am a practicing primary care doctor who is very much focused on patient centered care. Though I cannot go back to being a patient who is unaware about what a doctor does, the terminology she uses, or what the importance of certain test results are, I can empathize with the overwhelming amounts of information, challenges, and stressors patients and families can have in navigating the healthcare system to get the right care. This is the reason I wrote my book.
However, over the past few months I’ve noticed a particularly disturbing trend. Patients are not consulting doctors for advice, but rather demanding testing to force diagnoses which are not even remote possibilities. A little knowledge can be dangerous particularly in the context of little to no clinical experience. Where many patients are today are where medical students are at the end of their second year – lots of book knowledge but little to no real world experience.
More patients are becoming the day traders of the dot.com boom. Everyone has a hot stock tip, only now it is “be sure to ask your doctor for this test” or “ask for this medication because it is the only one that works”. Everyone is an expert with his own suggestion on what should be done. If a medical expert, like a doctor, weighs in and does not agree, then there is a set of patients and doctors who begin to argue that these doctors are out of touch or arrogant.
Hardly.
I certainly agree that many doctors frown upon their patients doing research online. I disagree with my colleagues. I’m all for patients being partners in their health as long as when they research they also go to reputable websites, like the Mayo Clinic or Kaiser Permanente, and also give equal weight to my medical advice. Ultimately, patients should be more knowledgeable about their health and engage not only with doctors, but with family and friends as health does not begin with doctors, but in households and communities. However, today’s world is increasingly polarized due to the ability to gather information and find opinions of like minded people quickly and easily. A patient researching information can unwittingly blind themselves into believing that a medication, a treatment, a test, or a diagnosis is the only one that explains their symptoms.
Many of the patients who Google their symptoms, do cursory research, and are so convinced that they have a particular problem and need a particular solution are the group I worry about the most. They want to see a specialist for a problem adequately handled in primary care. They want a branded medication when a generic medication works equally as well. They want CT scans and MRIs for migraine headaches or sprained ankles when a generation ago, doctors and patients believed diagnoses based on common sense. They decline vaccinations for preventable illnesses like pertussis, whooping cough, because they are healthy and don’t want “chemicals” even though the state they live in had the worst outbreak of pertussis since 1955.
With more Americans paying for their health insurance through higher copays for doctor visits, medications, imaging, and treatment, it is understandable that they want more information and are seeking it. What is particularly troubling, however, is much like the day traders of years ago, many are bypassing experts for some advice and consultation. Indeed a decade ago many ridiculed financial guru Warren Buffet for failing to understanding the new world and being a dinosaur. Principles of the past no longer applied. (Of course, financials principles remained – you do need to make money to be an ongoing company). As a front line doctor, I’m seeing the same phenomenon in health care. Doctors still clinch the right diagnoses by talking to and then examining patients. Skipping directly to lab work or imaging often gets the wrong answer. Sometimes there is no test or imaging study that can get the diagnosis. Yet somehow if asked, patients retort I don’t have money to see you, I’d rather spend the money on the test or medication, so can you order it?
Like the day traders of a decade ago, these individuals have the illusion of control or mastery. Only later do they discover when the results are normal and the problem remains that being an expert and having the ability to take in information, process it, and then come up with a plan is harder than it looks. (Dr. Lisa Sanders, whose New York Times series Diagnosis was the inspiration for the television show House, M.D., has excellent patient cases which challenge the public on getting the right diagnosis).
That is not to say that there are not patients who are indeed experts. The individuals who are leading the empowered patient movement often know a lot about their diagnoses and treatment options and have mutual respect from their doctors. Enlightened doctors realize that they cannot know it all. I would hope and believe that empowered patients also recognize this inherent problem in themselves as they also cannot know it all either. It is the rich discussion and collaboration which occurs when both groups are on relatively equal footing in terms of knowledge that the answers, solutions, and treatment plans are far better than if only one side or the other led the conversation. Those patient experts probably can and have identified their condition when they read it in Dr. Sander’s column.
Who would have guessed that the day traders of the past would now appear as patients? Funny and sad how history repeats itself. The difference is unlike money the stakes are significantly higher when it comes to health.
Not sure what to do when you have a problem? It’s ok to research online, but then have an open mind when talking to your doctor. If your doctor does not want to listen, then find another one. Be sure, however, as you research and listen, that you do not become a day trader. Indeed, if not done correctly the consumer driven health care movement has the potential to be equally as problematic as the retirement planning and investing movement a decade ago.
Davis Liu, MD, is a practicing board-certified family physician and author of the book, “Stay Healthy, Live Longer, Spend Wisely – Making Intelligent Choices in America’s Healthcare System.” Follow him at his blog, Saving Money and Surviving the Healthcare Crisis or on Twitter, davisliumd.
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Dr. Liu,
Your point is well taken, but your daytrading analogy is not entirely compelling.. Daytrading became a possibility a decade ago because of the online access to realtime financial information. Patients have armed themselves with medical information because it too is available online. The patients are simply reacting to the data they have at hand, and because of their limited medical context, they often emphasize the wrong thing (e.g, wrong or useless test). And, yes many daytraders lacked stock market context, and lost their shirts for it. But the underlying similarity here is availability of information, not the daytrader mentality. I like ‘groundswell’ or online groundswell’ better.
Best, James
I’m always eager to hear stories from the front lines, whether it’s from a patient’s or a clinician’s perspective. These stories fill in details that I often don’t get to see since I spend the majority of my time working with survey data.
However, I think survey data can play an important role as we try to figure out the scope of the problem described above (in the post & in the great comments so far).
Here’s an excerpt from a Pew Internet Project report I wrote last spring called “Peer-to-peer healthcare”:
When asked about the last time they had a health issue, 70% of adults in the U.S. say they received information, care, or support from a health professional. Fifty-four percent of adults say they turned to friends and family. Twenty percent of adults say they turned to others who have the same health condition.
People living with chronic conditions are more likely than those who report no conditions to say they turned to a health professional: 79%, compared with 63%.
Please see: http://www.pewinternet.org/Reports/2011/P2PHealthcare/Part-2.aspx?view=all
Another section of the report is titled, “Different Sources for Different Kinds of Information” — 9 in 10 adults say doctors and nurses are more helpful than other sources, such as fellow patients, friends, and family, when they need a diagnosis. Just 5% of adults say they find advice from friends, family, and other sources more helpful.
Please see: http://www.pewinternet.org/Reports/2011/P2PHealthcare/Part-3.aspx?view=all
We seem to be in a transitional moment. People have access not only to information, but also to each other. People are able to seek & share advice at internet speed and at internet scale. This could go either way — toward a future in which people are educated & empowered with just-in-time, accurate & useful information or toward a future in which people are confused & frustrated by too much information & conflicting advice. My hope is that we make our choices based on data, not anecdote.
I would suggest that you will see more and more of this. As Steve says above there is a lot of misdiagnosis that happens even by professionals. As patient foots more and more of the bill and traditional medicine keeps relying on drugs as a solution for every problem patients have to get involved.
I am fortunate to have a physician that listens to what I bring to the table and who is willing to have a discussion and who is willing to be influenced by what they may not have known.
Physicians can have a hard time keeping up with the new technology, protocols etc. A motivated and intelligent patient who is engaged can help them stay abreast. I would suggest that physicians embrace patient self education and help them find reputable sites for their research rather than bemoaning that the patient really does not know what they are talking about.
Your book and your blog gives much advice to patients and your blog has also stated such items as only one in four primary care docs screen for colon cancer properly. What choice does a patient have but to google given these circumstances? The pity is that not all docs follow the guidelines listed in your book and keep up to date on standards such as important screening for colon cancer.
Davis,
Interesting analogy. The reasons why more and more patients are becoming “day traders” is because they have to. Consumers – all of us – are hear every day on the news how only 50% of patients get the recommended preventive and treatment services from our physicians. Or how bladder cancer patients aren’t getting the recommended treatment follow-up. Tell me again how often women aged 40+ are supposed to get mammograms?
Add to these trends the fact that the majority of patients leave their doctor’s offices not understanding what they were told by their doctor as they had one foot out the exam room. Numerous studies consistently show that doctors underestimate patient’s desire for health information and overestimate how much information they really provided patients.
Also consider how many times patients hear or read (on blogs like yours and mine) that physicians are too busy or don’t get paid to provide XYZ services. Kinda makes one wonder just exactly what part of healthcare there physician is not providing them.
The simple fact of the matter is that many patient are becoming “day traders” because they no longer feel they can trust that their own physician is looking out for their (the patient’s) best interest.
I prefer to call the phenomenon Doctor Liu describes as the “groundswell’ rather than “ day trading.” In their book Groundswell, Winning in a Word Transformed by Social Technologies (Harvard University Press, 2008). Charles Li and Josh Bernoff of Forrestor Research, Inc. define the groundswell as “spontaneous movement of people using online tools, to connect, take charge of their own experiences, and get what they need – information , support, ideas, products, and bargaining power.” They go on,”It’s global, It’s unstopplabe..and it’s utterly foreign to the powerful companies and institutions – and their leaderships – that run things now.”
The groundswell is something we physicians are going to have to live with. At its worst, it is individualism run amuck, ignoring clinical experience ; at its best, it’s an informed consumer unstuck from clinical ignorance, prepared to listen to a better informed clinician. Somehow we physicians must learn how to seize the middle ground of the groundswell.
One approach, which I like, is having the patient record his/her clinical history online before entering the exam room using the Instant Medical History as a basis for mutual discussion. It’s a trade-off designed for patient day traders.
This is an interesting post…I agree…yet, think you need specifics to convince your audience. What type of diagnosis would a face-to-face consult produce a more concrete diagnosis than a test? I prefer the in-office because we are dealing with cancer (on a sidenote…we got the test….a biopsy…the ENT at Cleveland Clinic, did not read the lab notes…he messed up the biopsy and it was too dry to come to a conclusion……human error….twice he sent us home telling us there was nothing to worry about. A second opinion discovered this after eight months of lost time and cancer spreading). There is no perfect abc/xyz plan in medicine…although…doctors are their own worse enemies when it comes to PR…I must admit it seems a segment of patients want empowered into bully status.
Your post was thought-provoking…providing examples would be encouraging for the average to understand why bypassing the doctor visit would be profitable for their health…when most are going to view it as profitable to you without some anecdotal evidence.