Saving patients from Internet health information

Lately, I get the feeling that I’m doing something wrong.  I’m supposed to form a partnership with my patients.  My patients are supposed to be the working partner and I’m supposed to be the consulting partner.

My job as the consulting partner is to offer sagely medical advice to the boss (working partner).  As a consultant, I’m supposed to help in the making of key decisions, find the appropriate tools to help make the boss healthy and happy, and instruct the boss in how to implement those tools should he decide to follow my advice.

As the boss and working partner, my patient is supposed to weigh his options, institute those procedures and treatments as prescribed and to keep me updated on how he is doing.  His job should also entail reviewing key health decisions with me prior to making changes in his overall healthcare.

Lately, my patients have been making unilateral decisions.  In other words, they have not been consulting with me, their doc, prior to changing or stopping their medications or other treatments.  While it is well within their rights to institute or stop any medical intervention on their own, it is often wiser to utilize the services of a trained consultant/doc.

This latest trend toward patient autonomy baffles me.  Yes, the Internet is full of information and advice; however, the Internet’s info and advice is uncensored, impersonal, and biased.  Much of what the Internet claims is gospel is really the carefully disguised marketing of junk.  The legitimate, scientific data that can be gleaned from the Internet often exists in a vacuum.

Case in point.  When researching Actos, a medication used to control diabetes, the Internet will inform you that recent studies suggest that the use of Actos may be associated with a rare form of bladder cancer.  While the operative words are “may be” and “rare,” the only thing my patient sees is “cancer!”  Rather than coming in to discuss this new finding with her doc, my patient stops her Actos.  Three months later, her blood sugar is out of control.  Her kidney function is now abnormal and her primary disease, diabetes, is having its way with her.

The Internet failed to inform my patient that Actos was instrumental in the control of her diabetes.  The Internet failed to inform my patient of the benefits of being on Actos.  The internet did not know my patient.  It did not take into account her individual needs or the damage done by invoking the fear of “cancer!”  As a consultant, my job is to take all of those factors into account.  My job is to “care” for the individual.  The Internet is “careless” (without care) by its very nature.

So, what am I doing wrong?  I’m in the office 5-6 days a week.  When I’m not in the office, I’m on call.  I don’t leave the office until every last one of my messages is dealt with.  I write this column daily, teaching people to be self-empowered.  Maybe that’s the problem.

Perhaps the problem is that people underestimate the risk of being empowered and making unilateral medical decisions.  Stopping the wrong medication can lead to heart attack, stroke, or even death.  Stopping other medications can lead to uncomfortable or dangerous withdrawal symptoms.  Deciding not to do critical tests can cost you your life or diminish the quality of the life you have.

Yes, the patient is the boss.  Most successful bosses have trusted consultants who help them stay ahead of the game.  Form a partnership with your doc.  Use him or her as trusted consultants before making any healthcare decisions.  The life you save may be your own.

Stewart Segal is a family physician who blogs at Livewellthy.org.

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  • Anonymous

    From the other side of the tracks: I’ve seen a lot of doctors in the past two years. Few really take the time to educate me about my condition(s) or why this or that course of treatment is recommended. Answers to queries are perfunctory and brief. Thus I turn to the Internet to understand what’s going on.

    Meanwhile I’m told I have a genetic condition I don’t have, because one doctor neglected to look closely at my records and ran the test in circumstances that would guarantee a false positive. Another doctor loses track of what he’s treating me for entirely (DVT) and seems baffled I keep asking him about a “clot.” Another doctor insists on a CT scan of my brain as quickly as possible, and schedules a visit to discuss it with me a day later. Yet when I do see her to discuss it, she forgets she ordered the scan and assures me, when I ask about it, “Oh, you don’t need a CT scan at all. Completely unwarranted.”

    During a recent 4-day hospitalization, nurses tried to give me Tylenol 3 on three occasions, even though I’d informed my doctor of a severe reaction to Codeine several times and had filled out forms at three places in the hospital listing this as an allergy. One RN kept insisting it was in my doctor’s orders and thus it was completely safe for me. I’ve also had a doctor’s office end up recommending 4 times the top amount of Digoxin, because each time I called in with fibrillation, someone raised the dose by another half pill, but no one charted it or made any record of it. Only my sharp pharmacist recognized something was seriously wrong.

    Another doctor accidentally doubled the amount of a prescription in a routine call-in for a refill. Again, the pharmacist caught it. Also, after that hospitalization, where my doctor changed my medications several times, I had a follow-up visit 10 days later. My cardiologist’s office had absolutely no record that my meds had been changed and in fact were two drugs behind me. Had I been hospitalized again unexpectedly, my cardiologist’s office would have had no idea at all what drugs I was on and there’s no telling what I might have been given.

    I can assure you from talking to my friends and coworkers that these experiences are hardly unique. You may do a great job of handling your patients and their needs. But that is increasingly a rarity, so, yes, we patients do turn to the Internet to educate ourselves and to second-guess your recommendations. For some of us, it’s our only chance of staying alive, lacking a medical system in this country that can provide competent care.

    • http://www.facebook.com/docgaurav Gaurav Gupta

      You have an amazing medical history ! I agree with you that many doctors are not spending adequate time / effort with their patients.

      But two wrongs do not make a right, and the case of Actos that has been described is very valid too ….

  • broadthinking

    “Perhaps the problem is that people underestimate the risk of being empowered and making unilateral medical decisions.”  This sentence troubles me. I don’t believe there is inherit “risk” with being “empowered.” The risk is a failure in communication – period. Or, of making unilateral decisions without all the pertinent facts. Docs have precious little time in the exam room. We, as patients, on the other hand, have much more time to browse the web (in an effort to find clarity and/or answer questions that might have arisen long after we left the doctor’s office). There is a balancing issue here for sure. Perhaps more emphasis could be placed on educating patients on how to use the web and what to do with conflicting information. I think managed care organizations should also help with this critical piece of patient education. 

  • Anonymous

    If you had truly established a partnership with your patients they would not be making unilateral decisions. Patients resort to that behavior when they do not have confidence that they can access their doctor in a timely fashion or that the doctor will truly listen to them and help them make a decision that reflects their values, preferences, and lifestyle. The problem is the quality of the relationship not the quality of the information.

    • Anonymous

      In this case, I doubt the physician was not investing quality into the relationship.  People will utilize the, mostly evil, Internet regardless of their level of confidence because we have become hard-wired to believe that the information on the Internet is true; that reading about the experiences of others is helpful; and that we might learn something the physician has not had time to consider. 

      The bulk of the comments here are typical of internet-think.

  • http://pulse.yahoo.com/_KCL4AO3HM6GTZ2X4RD3BQD5JPI GPZ

    You cannot save patients/people from themselves. No matter how much you ‘educate’ your patients on what ails them, some will be inherently sceptical and will find a ‘better way’ for themselves. 

    You cannot help everyone, and patients should readily seek out a second opinion. I don’t mind having my recommendations reviewed by another physician. Physicians are medically trained for 7-10 years in order to digest the data and provide the patient with an educated opinion. What the patient does with that opinion is his prerogative.

  • http://www.facebook.com/profile.php?id=744889274 Laura Haywood-Cory

    The Internet, like fire, is a tool–it’s neither inherently good nor inherently evil. You can use a fire to warm yourself, you can use it to cook food, or you can burn your house down. The trick is to use it responsibly and well. Same with the Internet.

    I have a rare heart condition; I had a heart attack caused not by high cholesterol or obesity or high blood pressure or smoking–but from a spontaneous coronary artery dissection. Most cardiologists have never seen one. All I was told in the hospital was that it’s rare and I’m lucky to have survived, then I was sent home, with basically no info. That’s a scary, lonely place to be at 3am, unable to sleep, not knowing whether your condition will recur, what the long-term prognosis is, or even what the standard treatment might be.

    Thanks to finding some other SCAD survivors online, I actually know more about my diagnosis than most doctors do. Thankfully, my cardiologist isn’t threatened by me, an informed, educated, empowered patient. He has a dialog with me; he doesn’t dictate to me.

    So yes, I plan to continue using the Internet to research my options and connect with fellow patients. 

  • Jenny Walsh

    I’m sure there was a lot of this story that was left out.  However, as written, I had several questions.  Was this patient given a heads up about the rare cancer risk from using the prescribed Actos?  Was it given in writing (to read over again in freak out moments after seeing something on the internet or hearing something from a friend or family member) and with an explanation of the pros and cons and why you thought this medication was best?  Was this patient given the opportunity to discuss how any cancer risk was so frightening that it would make adherence to the treatment plan impossible and a chance to ask if there is any other treatment that would cause a less visceral response?  Were the pros and cons of rapidly discontinuing or being irregular with the medication discussed?  Did the patient understand their condition and the inherent risks associated with nontreatment?  A patient should hear from their doctor about these risks and discuss the potential treatments and then feel comfortable with the decision.  If not, this wasn’t personalized medical care–at least they can’t tell it is.

  • http://www.facebook.com/seungk5 Seung Oh

    It is so true…  there are lot of false information out there and people without real credentials giving medical advices.  Especially “holistic” market tends to sell and teach things without clinical studies or evidence.  I am not saying all holistic is bad, I tend to like the holistic approach but I think you need be able to back up what you are saying. 

  • Anonymous

    I have to agree with dcpatient.  I go to the internet it’s very difficult to get timely and accurate information from any medical professional.  Add the cost of a medical visit, I would rather just make that unilateral decision.

  • http://profile.yahoo.com/U7RXLQOFBYXS6QWUBYCSEPEN3A Ranjita

    patient makes unilateral decisions!! because of few medical practitioners who only makes money????

  • http://twitter.com/joeketch Joe Ketcherside

    How much time do you spend talking with your patients during an office visit? 1 minute? 3 minutes? People who are interested in their care, who want to understand their illness, will not get all the information they need from their physician. If you really want to help, quit whining about your patients learning and start providing them with good, reliable internet sites that have valid information that they can read and re-read at their own pace.

    The days of “doctor knows best” are long gone. Quality and safety studies prove that. For the sake of your patients please join the 21st century.

  • http://pulse.yahoo.com/_CSPWC7IMWR3A7S2ERVE2QWUYLM Janice Flahiff

    Many good points here (length of office visits, physician supplied Internet information, etc).
    Although patient empowerment movements, as e-Patient Dave (which does include consulting with physicians) are great…

    I do generally agree with this article….and said so in a blog post this morning.
    (http://jflahiff.wordpress.com/2012/02/23/saving-patients-from-internet-health-information/)

    Does the US healthcare system need improvement? Yes, and anything that would provide for more physician-patient contact time at reasonable rates would definitely help in dispelling misinformation.

  • http://twitter.com/SusannahFox SusannahFox

    Cease fire!

    I have read too many essays like this one, whether in a click-bait blog post, mainstream media outlet, or medical journal. I propose that we move the conversation to a higher level, based on evidence, not subjective opinions and observations.

    Here are a few articles I’m re-reading this week, in case you want to join me:

    A Patient-Centric Definition of Participatory Medicine (E-patients.net, 2010)

    http://e-patients.net/archives/2010/04/a-patient-centric-definition-of-participatory-medicine.html 

    Accuracy and self correction of information received from an internet breast cancer list: content analysis (BMJ, 2006)

    http://www.bmj.com/content/332/7547/939

    Health
    information on the Internet: accessibility, quality, and readability in English
    and Spanish (JAMA, 2001)

    http://www.ncbi.nlm.nih.gov/pubmed/11368735

  • Kshitij “Aneesh” Nawal

    Since the time when a patient has turned into a consumer of health care, the doctor-patient relationship has transformed from a trust based to a commercial relationship. Loss of trust in doctor leads patients to resources out in the wild on internet where trusted resources are masked by untrustworthy, goofy and moneymaking websites.

    Patients seek a compassionate and empathic doctor in whom they can trust and have faith. The mere touch or site of such doctor heals many ailments. If we can bring back trust in relationship of doctor-patient then we need not worry about what information patients read or come up with. Their trusted doctor can help them understand the information, ask intelligent questions, help them weed out the useless information and protect them from false advice.

    Technology always works as a double edged sword. However, we do not give up on technology just because it can harm us. We just need a shield to avoid any harm done to the patient and in this case the shield is the trust relationship between doctor and patient.

  • http://pulse.yahoo.com/_AHJLBFNNBNL7SVEXJCRGWDZTBI Braidz

    “The doctor was right after all”, has often been my conclusion after checking out the doctor’s advice on the Internet.

    “The doctor was right” was also my realisation after I posted a question to other patients about their experience. The answers they gave coincided overwhelmingly with the doctor’s advice, and convinced me to follow his recommendations. (I always need to know WHY! So if the doctor has made a somewhat weak case for his recommendations, and if pieces of the puzzle are missing, maybe because of time constraints – well, that’s where the Internet can come in to supplement it.)

    So that has been my experience. Although I do realise that it would also be possible for a person to get biased information/ wrong advice, all depending on how one searches for and uses Internet information.

  • Anonymous

    Either this doctor is delusional or horribly out of touch.  He might read THE TRUTH ABOUT THE DRUG COMPANIES, TOXIC PSYCHIATRY, OVERDIAGNOSED, SELLING SICKNESS and tons of other books, articles and other information about the massive fraud perpetrated by the medical industrial complex with medicine mostly in bed with BIG PHARMA and other huge corporations and corrupt government hacks with revolving doors.  Main stream medicine has become so corrupted by money that even doctors can no longer find legitimated infomation about drugs and other health issues unless they consult alternative web sites exposing the fraud.  So, rather than bemoaning the fact that this and other doctors are not longer worshipped as gods by a bunch of uneducated peasants, he should do his homework to see the zillion reasons why trust in the medical plutocracy/pathocracy has been destroyed by people like him refusing to treat so called patients with mutual respect and partners in their OWN care!

    • Anonymous

      You should not be allowed to post.  You do not comprehend what is written and respond with abuse.

      • Anonymous

        You should not be allowed to post your ignorance or abuse other posters.   Anyone who has done their homework about the problems with mainstream medicine knows that drug companies routinely do bogus studies, cover up the negative side effects, and spin the rest to make a useless, often toxic drug appear very beneficial.  Also, BIG PHARMA has corrupted many doctors with money, gifts, perks and so called continuing education as taught by BIG PHARMA. Most doctors learn about new drugs from drug reps or BIG PHARMA paid shill studies, ghost written articles and ads in once prestigious so called medical journals like THE NEW ENGLAND JOURNAL OF MEDICINE.  Though not all doctors are corrupt, they are forced to rely on corrupt information.  Recently, a group of Harvard medical students protested when they realized their professors could not teach in an unbiased manner because like all too many key opinion leaders (KOL’s) they had too many drug company ties.  One example is statins for so called high cholesterol.  Statins have very damaging side effects on the muscles and other problems, but those setting the guidelines keep lowering the threshold on cholesterol levels to be drugged due to their drug company ties.  This is the rule, not the exception.  Anyone doubting what I say can feel free to do their own research.  Medical drug errors and toxic drug reactions are now one of the major causes of death.

        Any patient that automatically takes a prescribed drug without doing research in reliable sources like THE PHYSICIAN’S DESK REFERENCE, is taking their life in their hands now.  I was prescribed a fairly new drug for irritable bowel syndrome and when I looked it up, I saw it was not indicated for my type of problem and if I had just taken it, I could have died.  This horrible drug was taken off the market not too long after my “near death experience.”  What about Avandia, Viox and other scandals and the many who died as a result in their trust in BIG PHARMA and doctors?  Again, doctors are fallible humans like the rest of us and not Gods though some think they are!!

        Kindly do not send your obviously self serving comments to me again.

        • Anonymous

          I sent you nothing.  I made no comments that could be construed as self-serving.  I have been actively working on the problems you state for 40 years.  But, your response to the article was inappropriate.

  • Anonymous

    I have often said, “Thou shalt not consult Dr. Google.”
    There are some very helpful patient-oriented sites, and some that are outright frightening. Unfortunately, people often gravitate toward the negative – the folks spouting off one in a thousand horror stories are often the loudest.

    Granted, like every other profession, there are bad doctors. Sometimes looking up information on conditions can be life-saving in those situations. Also, there are conditions that are uncommon or outright rare that only specialists pick them up. Still, there are those scary and inaccurate sites. 

    I’ve noticed there are helpful things that patients can do to educate themselves on their conditions. There are lots of patient-friendly books and websites that are accurate and written or reviewed by physicians, nurses, and other specialists, or atleast have peer-reviewed studies to back up information given. Pharmacists are excellent sources of information on medications. Encouraging patients to call and speak with one of the nurses on staff, or to see if their insurance companies offer ask-a-nurse services (mine does 24 hours a day and even on holidays). 

    People frequently need to be taught on how to be smart while reviewing research. An extra two minutes going over reputable sources of information, or even having a handout ready, is a good thing.

  • Ruth Ann Artz

    Agree, Meredith. It seems there are patient’s who are completely uninterested in understanding their disease process and then the pendulum can swing to the over-knowledgeable patient…They are the people who see the worst on a website and assumes the worst. 
    In discussion with  someone who “knows better” I often ask them to look up aspirin. Reading the side effects of aspirin, a simple over the counter drug that most take for granted, it is a lesson for the patient in learning that the worst outcomes are always more searchable than the outcomes that are successful.
    The good outcomes are not as juicy to read nor do most people post a good outcome, usually only the bad. 

  • Sarah Knight

    I personally would never trust the internet to give me a more solid and realistic diagnosis than a trainer Doctor. That’s what common sense is. You can punch a generic set of symptoms in to a search engine and find all sorts of things you don’t have and don’t need medication for. It’s as bad as reading your horoscope in a way. That said, I find it frustrating that GP’s in the UK are often dismissive leaving you feeling unheard, which I think is what can provoke people to visit “Dr Google”. It’s a difficult balance for a GP to strike – dealing with frequent flyers without taking their exasperation out on those of us who only go to the doctor if we think something is genuinely awry. Gone are the days where you see the same doctor every time, sometimes it can feel like a lottery, will I get someone interested and present in the room, or some jaded face whose already decided I’m fine before I’ve sat down.
    My partners grandmother was only diagnosed with bowel cancer after being sent off to the hospital for a second hip replacement she didn’t need. How no-one noticed the massive (!) tumour in her stomach and the fact she’d lost a large % of her body weight is beyond me.  She’d likely have died if the bone doctor hadn’t bothered to feel her stomach, why hadn’t her GP done this basic test months earlier? Things like this is why people lose faith and go online to investigate by themselves.

  • http://www.HealthcareMarketingCOE.com/ Simon Sikorski MD

    Dr. Segal, I took this opportunity to review your own website https://lzftc.com/ and your blog. Please do not take offense and take this as an opportunity to improve. 

    On your own website, instead of having actual patient resources you’re sending your patients to the websites that have the misinforming information you’re complaining about? Why? 

    On your own blog… Livewellthy.org do you realize how hard it is for anyone to read something that is not organized?

    Why is it that most doctors complain about these things and yet take a passive approach to the internet as an educational resource? If you’re dissatisfied with the status quo of the amount of misinformation on the web be PROACTIVE.

    I’ve worked with a few hundred doctors since 2002 on website and internet marketing and the most common denominator is that their websites are not for “commercial use” – they instead become the trusted and reliable source of information. It’s also an opportunity to demonstrate why YOU are the expert. 

    Give patients and referring physicians a chance to find out why they should trust your judgment. 

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