About the author:

Howard J. Luks, MD

Howard J. Luks, MD

A Board Certified Orthopedic Surgeon in Hawthorne, NY. Dr. Howard Luks specializes in the treatment of the shoulder, knee, elbow, and ankle. He has a very "social" patient centric approach and believes that the more you understand about your issue, the more informed your decisions will be. Ultimately your treatments and his recommendations will be based on proper communications, proper understanding, and shared decision-making principles – all geared to improve your quality of life.

25 comments on “The Birth of an *e*-Patient

  • Fabulous. This is why what we are all doing matters. Reaching out and reaching back! I’m so amazed by this entire encounter and the positive responses. Well done all around.

    cheers,
    Melissa

  • Bravo — on so many levels. Brilliant to get Trisha Torrey involved, Howard, not only for her expertise but to model collaborative care for Shawna.

    What got to me the most was Shawna’s question about whether patients are “allowed” make suggestions about treatment and care. My rhetorical question: when did healthcare providers become terrorists and enemies? Great that you could show how you are neither.

    • Meredith, Agree that the modeling of collaborative care is a fantastic use of health social media. Also, the fact that Shawna knows that others care and will share their experience gives her hope that she doesn’t have to just accept status quo with her care to date. Finally, I cringed a bit when I read “are patients allowed to ask….” And so we continue to expound on what being an empowered patient means.

      Howard – Great job on guiding another “epatient” on her journey. Julie

  • Bravo, Howard and Tricia! You are true social media health whisperers. Every aspect of uncertainty and bewilderment was evident in Shawna’s comments and you coached her to gain her confidence. Simply inspiring.

  • This made my morning. Props to Howard and Tricia.

    For this patient, at this point in time, the social web has proved to be the best point of care. Period.

    @andrewspong

  • Howard – thanks for alerting me to this, inviting me to post – I am so choked up reading all this… :-)

    Shawna – welcome to the world of empowered patients! Please come back to let us know about your progress or to ask more questions. We’ll continue to help you as we can.

    People like Shawna are a perfect example of why I do the work I do. These lightbulb moments – simply observing Shawna’s realization that she can advocate for herself! Knowing that her life will be improved beyond anything it might have been before! It moves me beyond words.

    Social media is a great tool when put into the hands of caring people – like you, Howard – who are truly interested in partnering to improve the lives of others.

    Trisha Torrey
    Every Patient’s Advocate
    http://patients.about.com/

  • It’s truly wonderful to be a part of those lightbulb moments when someone’s eyes open wide open to possibilities they had no idea existed before. Is there an ROI for my engagement at the intersection of social media and healthcare??? You bet! And you just witnessed it. ’nuff said!

    • So interesting to see in writing exactly what patient’s knew in their hearts…it feels like asking someone to tell you what you already knew but would prefer to deny.

      My daughter’s doctors at Cleveland Clinic do spend lots of time with her if we schedule as last patient of the day…realizing that this tip doesn’t always work. Doctors there are salaried and make no extra money for staying…but one of their colleagues, purposefully, spent little time with patients (he is a goof off) and caused cancer to spread in my daughter’s lymphs (he was cited by the Ombudsman…doesn’t help us though). He simply did not read the lab notes…twice…and being naive I believed him.

      I share this so any patient reading this will get copies of their medical record and read it…ask questions….trust then verify.

  • Thanks for the message about this post, Howard. It’s a too familiar story, isn’t it, about a patient not knowing how to move through the health care (including insurance) world.

    It’s a testament to your dedication to providing great information to stick through the exchange and bring in a knowledgeable colleague.

    As I read through the post, I had so many thoughts – starting with the clarity of the MRI, the over-reliance on testing, the lack of regard for patient self-report and, the possibility, that without your continued counsel, this new e-patient might have shown up a few more years from now in a pain program.

  • Howard, this is truly an example of the real ROI of your pioneering social media efforts for physicians. When my son was hit by a pitch in baseball, you also encouraged us to seek a second opinion and made my teenage son an empowered patient.

    Through social media, we discovered and participated in Dr. Berger’s Twitter Chat from the Mayo Clinic. It was found that he had an ulnar ligament injury similar to that which Dr. Berger diagnosed for MLB Outfielder Jason Werth. The second doctor was open to learning and gave my son Dr. Berger’s test. The result was positive and my son was able to receive the correct treatment he needed and deserved. However, being an empowered patient is not an easy road.

    Thank you; you are appreciated!
    Angela

  • dr. luks-i am humbed by all of this. truly. i live in los angeles, and have come to feel like one little clog in a very big machine, where there is no small-town doctor connections made anymore with (everyday) people like me [i understand b/c of what ms. torrey & dave revealed-confirmed-that it is b/c of the ins. co. pressures/greed], but thru this media, you have managed to make me feel a little less small.
    what you are doing for people like me is good. keep it up,pls.

    again, thk u.
    -shawna

  • “…just don’t know what rights i have, if any, ……”

    This is what one will hear in more than 70% of cases, if a patient is asked “do you know which are your rights as a patient?” and this is not something particularly American, I would say it’s universal.

    It’s what a Patient View report found in the UK (http://www.patient-view.com/Patients%20Association%20Patients%27%20Rights%20and%20the%20NHS.pdf) and also what prevails in other EU member-states.(http://www.patient-view.com/ACN%20and%20Patients%27%20Rights.pdf). Even in countries which do have a patient rights legislation, it is often not enforced…The majority of health professionals are interpreting law as they think best or how it suits them….

    Patients more than often, not knowing what their rights are, fearing to displease the physician, do not speak up and accept whatever is told to them… If patients get to know about their disease, the patient rights in their country, what other patients with similar diseases do, then they will be encouraged to search for physicians that really want to help patients and will be prepared to face health professionals for whom they are just a name in their appointments list….

  • You have hurt, not helped this patient.

    After years of pain, she goes to the ER. Wrong move. Always go to internist first. Then to OS and gets an MRI. She probably just called for the MRI results and some clerk read her the report. Wrong move. She should have followed up in person with the OS who, when the patient complained of continued symptoms would have taken a second look at the MRI and examined the patient again or ordered a different MRI or PT.

    Enter Trisha who rants about how the PCP doesn’t care and is in it for the money, yada yada. Real helpful.

    Now the patient quits her PCP and armed with tweets, has to start all over with a new PCP and OS.
    She still does not know the proper way to access medical care. Dont’ go to the ER, go to PCP, If not better, go back.,

    But you have a new e-patient (who still doesn’t have a diagnosis but has a lot of anger, confusion and even more distrust in doctors)

    • Shirley… I’m sorry you feel that way. I did not recommend a trip to the ER and rarely do. I simply recommended a second opinion if she was dissatisfied with the care she received, and suggested a second opinion on the MRI reading as well.

      The issues present here go far deeper than an isolated set of recommendations to one patient. The person in question here now understands her place on her health care team — as an equal— and the focus of the team’s attention. In addition, she is now aware of a movement that has been rapidly evolving on the ground and in cloud to address the issues of patient dissatisfaction and the shortcomings of the current system brought on by a multitude of issues we are very well aware of.

      Thanks for your comments .

  • Shirley,

    What would you offer her instead?

    Shawna has run into nothing but dead ends yet she still does not have use of a pain-free knee.

    Dr. Luks was trying to help her understand that she needs more advice – that simply accepting what she had already “received” didn’t need to be the final word.

    I was trying to help her understand why her PA wasn’t being the benevolent, paternalistic care deliverer she had expected, then helping her with tools to find someone who could deliver what she’s looking for.

    Both of us were trying to supply her with what she needs to get the care she deserves. We weren’t doing it for her – we are giving her the wings and tools to be empowered herself.

    So what would you offer her instead?

    Trisha

  • Bravo for encouraging Shawna to be her own best medicine, patients absolutely need to feel empowered to ask questions, get a second (or third) opinion, and generally feel heard.

    However, SHAME on you for immediately jumping to the conclusion that the PCP and the NP were money mongering, sick patient shunning, providers. Certainly not all health care professionals are saints, but there are a myriad number of reasons that this interaction could have panned out the way it did (not wanting to treat a chronic pain issue with opiods, no evidence that an injection would solve the problem, physical exam suggesting something other than or in addition to what the patient describes here, a simple case of poor communication), and you just taught this patient that if her physician doesn’t agree with her suggestion, its most likely due to sinister selfish motives.

    • Thanks for your comments Rebecca. As a practitioner myself I agree with you that those may have been issues going through the physician’s mind when no further recommendations were offered. However, if they are not addressed with the patient, then how are they to know. This goes back to a topic we discuss over and over… communication. Clear, concise communication is absolutely essential to any patient-MD interaction. Aligning goals, objective and reality are equally important.

      Of course I agree with you that all physicians should not be lumped together and made to look like they are only after riches at the expense of a meaningful patient-MD encounter. I will not speak for Trisha, but I do not think she meant to imply that all physicians are like that as well, however….

      Again… thanks for your comments.

    • hi-in an attempt to “follow-up” w/dr. luks (as he suggested), i thought i would jump online really quickly to let him know of my latest experience…

      however, i don’t think i will get into all of that right now b/c i was SO taken aback by all of the activity surrounding my “birth” as an “e-patient” since my last visit-most of it positive and encouraging (not just to me, in particular, but to anyone, who happens to find him/herself in my position-online looking for answers they couldn’t get from their actual providers)-but to the few comments that don’t exactly reflect my experience, i feel compelled to say this:

      when you remark—
      “…but there are a myriad number of reasons that this interaction could have panned out the way it did (not wanting to treat a chronic pain issue with opiods, no evidence that an injection would solve the problem, physical exam suggesting something other than or in addition to what the patient describes here, a simple case of poor communication), and you just taught this patient that if her physician doesn’t agree with her suggestion, its most likely due to sinister selfish motives.”
      —i’d like you to understand that i had an acute flare-up of my knee pain, and yes, i was asking my PA if there were means by which i could manage my pain, besides just narcotics (opiates), but beyond that, i was asking for her not to dismiss me (or behave as callously as the OS had) simply b/c i had a normal MRI reading, but rather, to work to find the root cause of the pain…but i do not feel Trisha (or anyone else) was doing me any harm by pointing out the possibility that behind some of the callous/dismissive attitudes, patients sometimes encounter, can be attributed to the pressures that dr’s feel from the ins. co’s from whom they receive their payment.

      -not sure if the comment came from you, or Shirley, but regarding, how i should have returned to the OS for follow-up after my MRI, had i felt (in my spirit) that Care is what i would have received from him, and not another 5 min’s of his time only-where he talked to me as he was walking out the door- then i would have; and i do agree, had i had an involved/concerned PA, perhaps she would have thought to call the OS to request he look again at my persisting pain & my test results, but she did not think to do that…in fact, she seemed (as i commented) resistant to take any pro-active role in my care…also, just to be clear, i did not receive my test results over the phone, i picked them up myself.

      having said all that, i would like to repeat again, that i do thank you all, but as long as this pain continues to impact my life as it has, i will have no choice but to continue to seek care wherever i can, including changing providers, if my experience of my pain is not being received by them, despite my many attempts to communicate it, as best i can.

      thk u and good-nite.

      -shawna

  • Rebecca,

    First – Dr. Luks is right that I do not mean to insinuate that all doctors are money mongering, sick patient shunning… not at all. That’s not what that post was about.

    What I DO mean to insinuate is that Shawna is in a great deal of pain and all they were willing to provide were dead-ends. She tried to learn about alternatives, she asked about a variety of alternatives, and in effect, their message to her was that she would just have to live with it. She was being stonewalled. They gave her NOTHING.

    This is a shortcoming on the part of her PCP and PA – period. No one’s knee pops and gives out when it’s a healthy knee! No one is in that much pain when everything is working the way it’s supposed to! Shawna was doing her part. The “professionals” were not.

    Let’s consider other options besides the money mongering and patient-shunning…. Your own alternatives: Let’s say Shawna is drug seeking. Stonewalling is not the answer to that – but finding her a pain management option is. So why didn’t the PA recommend a pain management alternative?

    A physical exam might suggest something else is causing the pain…. So why didn’t the PA examine her further?

    Poor communication? No matter how much they improved their communication, it couldn’t make the pain go away….

    Truthfully, I believe the PA communicated quite clearly. In effect, the PA told Shawna that there was nothing else they could do for her. Period. Nothing is nothing – and quite clear. And my conclusion, based on the thousands of patients I have had conversations with over many years, is that if there had been enough money to be made from helping Shawna, they would have at least tried to help her.

    Trisha Torrey

  • Don’t know where you practice but in my neck of the woods I don’t know any doctors who make medical decisions based on “if there ..is money to be made”.

    Shawna saw the OS once. He ordered the MRI. Shawna admits she never followed up with the “callous” OS once she “found out the MRI was normal”. She probably called and was read a report over the phone. We medical people know normal doesn’t neccesarily mean nothing is wrong.

    I would have encouraged her to follow up with the OS for a repeat physical exam and a second personal look at the MRI. As her internist, I would have contacted this OS letting him know the patient had persistent symptoms and to look harder for a diagnosis.

    My message to patients is always, come back to ME if you don’t get better so I can go to Plan B.

  • All, I’m late to this party, so I’m reviewing it all after the fact.

    My take on this has nothing to do with the moment-to-moment events; to me the story here is exactly what Howard wrote about: the awakening of a patient who previously was pretty much the passive recipient of services, good or bad, and who’s now starting to say “Wait a minute – this isn’t right. I want more, I deserve more, and I will act.”

    This is, in other words, the birth of an e-patient: empowered (see above) and engaged (“I will act”) in her care. No longer being a passive lump who figures “They must know what they’re doing,” and expecting them to know all and do all, but taking responsibility for assessing whether the care is working.

    I can’t tell you how many times I’ve heard doctors at conferences mull or mutter about patients who expect miracles and just sit on their butts. Here’s one who’s not.
    ____________

    On the theme of awakening and empowerment, it occurred to me the other day, I hear lots of patients say they (literally!) don’t dare speak up because they fear the consequences of angering their doctors by asking a question. Anger, for asking a question!

    I’d never witnessed that at close range, but in March my friend Kelly at RAWarrior.com got it with both barrels: she asked to have a scan read a second time (the first read was for the wrong indication), and was startled to receive a registered letter: My Doctor Fired Me. It’s caused her so much trouble and pain that she now wonders whether it was worth it.

    Literally wonders whether the retribution she got from the doctor was worth speaking up.

    This reminds me (loudly) of the women in the 1970s who suffered retribution from jerko bosses for speaking up and saying they didn’t like being leered at, or wanted equal pay, etc etc, and they endured so much trouble that they too wondered whether it was worth it.

    Increasingly I’m starting to think that what we’re witnessing here is nothing less than the start of a revolution, a social revolution, in which mistreated people start to speak up, and some get smacked down for it, which reveals the true nature of the “well-intentioned” paternalistic dominators.

    Back then I heard, over and over, “Oh, you shouldn’t worry your pretty head about that.” And today I hear, over and over, “Patients can’t handle this stuff,” “Patients don’t want to be bothered with this,” etc.

    Today on e-patients.net we even heard one doctor, discussing hospital-acquired infections, assert that patients who are “uneducated, obese, [and] otherwise poor hygine” [sic] are more of a problem than all the evidence that hospital employees only wash hands half the time when changing patients.

    Of course not all doctors and nurses are like that! None of mine are, I’m sure none of Trisha’s are, Howard’s not, etc. But some sure are, and WOE unto any jerko who smacks down an e-patient when he or s/he starts to speak up.

    Exactly the same as when people started to speak up in the women’s movement, civil rights movement, gay rights… those who smacked them down, or lynched them, or shot them, were wrong.

    We must respect and encourage those who want to participate.

  • Hmmm, being left somehow puzzled after reading al of this. Sure, there will be Doc’s running for the money, and sure, there will be patients running for whatever they can get. Both are to be considered out o line. But that’s not the question i think; how to close the gap so a good informing Doc reaches out to create a good informed patient is IMHO. In this there are huge differences, some patient don’t want to be involved at al (i know my own wife doesn’t want to) and some want to know everything (i know i will), the trick is how to find out, and how to cope with things like time, doubling demand on healthcare, frozen budgets and shortage of skilled personell.
    Being happy with every e-patient (and be sure that i AM happy with it) that arises is one side on winning this challenge, but also being happy with every HC pro that finds a way to handle this in a environment that he or she mostly isn’t n charge of changing the odd’s on that side, is the other side. Every day we at the Radboud REshape & Innovation Centre are trying to change the odd’s on BOTH sides, working vastly on empowering patient, changed the definition of E-health into Empowered Health, working with medical and nursing staff and with administrators in our Academic Medical Centre and every day in a row see how “simple”it often is simple to creat good healthcare, by that doen’t mean that it is easy. It brought us to our statement “REshape healthcare: it is simple, but not easy”. Yes sometimes it is only on the communication level, yes it often is about being compassionated (https://www.youtube.com/watch?v=5o1kNN_g5Ik) and yes if only we listened to what patients, and their family could tell us. That;s why i appointed a CLO (Chief Listening Officer) for the online community we’ve build for and with young cancer patients AYA4 (http://www.forrester.com/rb/Research/case_study_radboud_hospital_supports_young_cancer/q/id/59950/t/2) . But keep in mind many, many healthcare professionals are caught in a non-changable environment at least where it goes for their mandate.
    So my call would be : “lets do both” and chear to the birth of every new e-patient, but aslo to the birth of e-Docs and e-Nurses where the *e* stands for empowering !

    Lucien Engelen
    Director Radboud REshape & Innovation Centre
    @zorg20

  • In my experience difficult doctor-patient relationships and experiences start badly and end up worse. If someone’s knee clicks and pops, locks or gives way, there should be something a doctor can find on clinical examination. I wonder if the first OS even examined Shawna’s affected knee before ordering an MRI!! If not, here is the first mistake. Second mistake is to treat the MRI, and not the patient. Third mistake is to ignore the patient’s real experience. Altogether bad medicine!!

    Good for you, Howard, Trisha, and best of luck Shawna. It sounds like you could have an arthroscopy as a final diagnostic procedure. I’m an ENT surgeon, so don’t trust my advice, but if I was you I would ask for good reasons why you should not have it from any doctor you see in future. That is what being ’empowered’ means, knowing all the right questions beforehand.

    Good luck

  • Dear Shawna,

    I hope your knee is doing better and you are finding the treatment you need. That’s the most important thing. Good for you for reaching out online and finding good support. I know you’ll probably pass that lesson on, too.

    —-

    Dear Howard, Trisha, and Dave,

    I read this whole thread, feeling more and more angst. Probably not a good time to comment, but it will be from the heart. Every day I deal with patients – hundreds of patients – who have problems like Shawna’s knee. Only the problem usually extends to both knees and numerous other joints. They can’t get the mri or the first read looks normal or there’s a normal sed rate – and they are dismissed… Like Shawna said, it’s impossible to continue to one’s life responsiblities.

    Why am I upset? Because these patients do their diligent duty. As mentioned in the Chicago Trib article, they do their part to try to particpate http://articles.chicagotribune.com/2011-07-07/health/sc-health-0706-bad-doctor-20110707_1_doctor-communicates-doctor-respects-patients-and-physicians.

    But none of it matters. It doesn’t matter how hard they work to learn about their condition or to make lists to ask the doctor or to research or to ask questions or to get 2nd opinions… Many in our field (rheumatology – the only one I could speak for) cannot get proper treatment anyway.

    Imagine my shock to see my own name mentioned by Dave at the end of this thread. Thanks, Dave. Unfortunately, I do get letters or calls from those who are afraid of being dismissed, possible more so because they saw it happen to me. And I have gotten a few who confessed that they too were fired for asking questions. While making calls to look for a doctor, I’ve found one of the big ones in Orlando doesn’t take new patients IF THEY HAVE SEEN ANOTHER DR IN THE CITY BEFORE. Says they don’t have to take them and they won’t.

    Here’s a link to a short recent post on my site where we asked people, What do you want in a rheum doc? And of course, my list of what’s needed. http://rawarrior.com/santa-bring-her-a-rheumatologist-please/

    PS: The people I hear from are just trying to get care for non-working body parts. I’m thinking it could never be so hard to get a car fixed. It makes me wonder why. My mechanic HAS to work for me & please me or I’ll go down the street. So, I’ve never ever had such problems getting help with a car as I do with my joints… And while I don’t subscribe to accusations of greed or have a political ax to grind of any kind, it seems that with a third party payer system of any kind, the patients don’t hold the purse-string power. It’s obviously complicated because if a doctor were just greedy, you’d think s/he’d WANT to sell more joint treatment. It must be bigger than that; somehow it’s also philosophical. They are rejecting the idea that we have a right to participate in the conversation. Sorry, that’s what I’m seeing in too many cases.

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