Does patient engagement set patients up for failure?

“Maybe we shouldn’t urge people to engage in their health care: it sets them up for failure and punishment from their clinicians.”

A senior patient advocate and researcher recently made this comment to a gathering of experts in patient engagement.

For a few minutes, I was inclined to agree with her. I thought back over the previous three months: the passive aggressive (and aggressive-aggressive) responses of some of my clinicians to my questions and requests; the petty pay-backs by them and their staff in the form of delays in providing records and returning phone calls; the casual and preventable disregard of my time.

This stuff wears on me, even though I am a confident and feisty patient with far too much experience being one. There are consequences to being an interested, involved participant in my care, and they are not always pretty. Why, indeed, should I urge others to take such risks?

On reflection, there are at least three reasons:

First: Not all clinicians are resistant to our participation in our care.  It’s my impression that more clinicians are interested in their patients’ engagement than ever before, but if the nurse practitioner or doctor in front of you isn’t, this is cold comfort. And having just switched doctors because my participation in decision making about my care was clearly unwelcome, I don’t underestimate what it takes to find a doctor who is a better match. But I do know that if I don’t make the effort to demonstrate that I want to participate fully in my care, I won’t have any chance to build a trusting, collaborative relationship with my clinician. I believe the potential gain probably outweighs the risk.

Second: It’s worth taking the risk because it is clear that we will not benefit fully from our health care unless we actively engage in it. If nothing else, our self-interest lies in our investment of time and energy in understanding our own health problems and the choices available to respond to them. Many of us don’t understand how much the success of our care depends on our willingness and ability to take on new responsibilities: We have to seek care from the appropriate source when necessary, present an accurate historical account of our health concerns, weigh alternative approaches to addressing them, and then agree on the ones that we are willing and able to follow through on—and then do it.

Third: Many of us are already engaged in our care – maybe not enough of us to persuade our clinicians that this is the new normal, but enough to give ourselves and our clinicians some experience in working collaboratively. However, establishing a good working relationship takes effort on the part of all parties. None of us has training in how to do it. Each of us, professionals and patients alike, bring to the table different experiences, expectations and personal characteristics. Each relationship is forged uniquely from those elements. Public statements about the importance of patient engagement gives heart to the growing number of people on all sides who believe this is the only right and viable future course for health care.

Realistically, though, our fellow patients will not ramp up participation in their care if they believe it is an optional activity to do if they have some extra time. We all need to know that it is necessary and that while it may not always be smooth sailing –our health and future depend on it.

Truth be told, I’m not sure that patient advocates are the best ones to educate fellow patients on this point.  Nor am I certain that the imprecations by the media and government agencies to “ENGAGE IN YOUR HEALTH CARE” is either the most effective message (too general?) nor the right sources (too adversarial?). Ideally, those with the most credibility on health matters – our clinicians, their practices, clinics, hospitals – would explicitly invite our active participation in our care.

Clinicians would do this by explaining our evolving and central role in our health and by welcoming us to join with them by participating in planning, decision making and follow-up to address our health concerns. Practices, clinics and hospitals could encourage greater participation by reducing the barriers we face: making it easy to understand how to use the services they provide and simple to coordinate our information and our care.

But those explicit invitations warmly welcoming our participation in our care have not been forthcoming from those ideal inviters who are distracted by the chaos rocking health care today. So in the meantime, let’s continue to hold the fort – to strengthen the expectations of our fellow patients that we can, should and indeed must summon as much energy and interest as we can to participate in our care, that is, to figure out how to use the tools of medicine to live for as long and as well as we can.

Jessie Gruman is the founder and president, Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs regularly on the Prepared Patient Forum.

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  • Steven Reznick

    When I took a course on patient interviewing at SUNY Downstate Medical Center 40 years ago the message was to listen to your patient, understand their concerns and invite them into the process. In the end you are seeing a professional because they should bring to the table a combination of education, continuing education and experience with what statistically works to you the patient. Most of us then share this knowledge with the patient, try and work out an agreed upon plan for future success and if asked will tell the patient which option they would choose for themselves and their loved ones if they were in that position. It is well understood that the patient is the ultimate decision maker.

    What is of concern is when as a physician you present evidence based data to patients who react to your suggestions by presenting internet derived material from non scientific testimonials with no well controlled studies to support their point of view. To give an example, men with low ” T” syndrome who do not meet the guidelines of the American College of Endocrinology, the World Health Organization, the USPTF or the Institute of Medicine for adult hypogonadism but insist they feel better taking extra testosterone. They then proceed to do what they want to do and you as a clinician are faced with the tough decision of continuing to provide care to someone who is making themselves ill through their actions or dismissing them as a patient.

    The current emphasis on short problem directed physician visits where patients spend more time waiting for their appointment rather than time spent with the doctor certainly do not create the proper atmosphere for the exchange of these types of ideas. I suggest scheduling a consultative visit for more time and possibly giving the physician advance notice of your concerns and topics you wish to discuss might put your doctor in a position to be more engaging.

    As with anything else there will always be individual professionals who just don’t get it and do not want to have well educated engaging patients. Hopefully they are few and far between. On the otherhand you just may catch your physician on a day when they are just not as open and receptive as they usually are.

    Marcy Syms of Syms Clothing used to say ” the best customer is an educated consumer.” I think most of us in the health care field actually feel the same way. Good luck to you in finding a care team that meets your needs

    • Brit

      A couple years ago my PMD referred me to a skin cancer doctor without
      telling me the doctor she was referring me to was a *skin cancer
      doctor.* I just thought he was a dermatologist. When I showed up the
      next morning, you can imagine my shock when the sign in front of the
      clinic said “CANCER CLINIC”. When I finally got into the exam room and
      had the biopsy taken, the doctor told me something that was one of the
      most shocking things I have ever heard come out of a doctor’s mouth. He
      wrote down two things on a prescription pad and said “Go home and look
      these two conditions up on the internet. It will give you something to do to pass the
      time for the next week while you are waiting for the biopsy results, and
      I want to make sure all of your questions are answered when I see you
      again next week.” He trusted that I was an intelligent, educated person who could understand the basic concepts of science and by putting that trust in me I had much more faith in him that he was aware of my unique situation and need to understand what was happening to my body and what to expect. Unfortunately for all other doctors that have followed after him, few have lived up to the standard he set. I probably would have done anything he told me to do because he had earned my trust and respect by trusting and respecting me first.

  • rbthe4th2

    Azmd and Dr. Reznick made some absolute good points.
    I want to add that I have 2 items that I’d like to see addressed that I dont think have been:
    1) I bring Pubmed and medical literature/peer reviewed literature/magazine articles that docs, I would think are reading. I ask about those things and am stonewalled. It always comes back to “you don’t trust us”. In other words, while I am told I can ask questions, it seems when it comes to saying I found this other treatment, or what about this option, they don’t answer it. What’s up with that? I come to docs because I believe they have the training to look at the info, compare it to what they’ve seen/heard/read/know/experienced, and help me further. However, they prefer to just dismiss me or say this is what I’ll do, go elsewhere if you don’t like it. (No one likes doctor shopping, but with answers like this, what do you expect?)
    2) Why is it so hard to look at a patients’ symptoms, then evaluate bloodwork based on that person? I’ve had signs/symptoms of metabolic alkalosis and respiratory acidosis, with the specific blood work levels either on the border or a couple of points below the border, and no ER could figure it out. I was sick for 10 days with 2 ER visits, a couple other visits, and I was able to figure it out by checking symptoms online and what the bloodwork should be. Yet ER’s and other docs couldn’t get it. I understood that bloodwork should be interpreted in light of the persons’ symptoms, but all I get is the bloodwork isn’t out of range or is low and that’s ok or its just mildly low we take no action. I just get sicker and sicker.
    Any ideas?

    • azmd

      “I bring articles…that docs, I would think are reading.”

      If you are doing research on your medical conditions, which is commendable, surely you have noticed that there is a huge volume of medical literature out there. A patient who is researching the literature on a topic of interest to him or her is almost always going to be more current on that literature than their physician, unless the physician is very narrowly subspecialized. In fact, the New York Times just published an Op-Ed piece on this today, saying “it would take dozens of hours each week for a conscientious primary care doctor to read everything he or she needed in order to stay current —an impractical prospect.”

      The full citation is here, if you are interested.

      I would suggest that if you have an article you would like to discuss, it is most effective to schedule a consultation appointment for extra time, and alert your doctor’s staff in advance that you have specific questions about an article you have read. That will give you a fighting chance of having a doctor who is not feeling harried and defensive, and who will have had a chance to review the topic you are interested in, and will be in a position to have the kind of discussion you would like to have.

      • rbthe4th2

        I will do that. The particular doc I was thinking of blew me off, but I’ll see if the regular doc is a little better. He hasn’t been in recent days, but when a patient tells you I’m sick, and he says your bloodwork is fine, I have to think twice about them.
        This is an internist who “directs” my care, and his office said that anything that occurs between me and any other specialist is between me and that specialist.

        • azmd

          It sounds like the problem might be that you and your doctors (actually you and most doctors) have a different working definition of “sick.”

          For a doctor, being “sick” means that the patient has an illness which requires treatment. It is possible to have symptoms which are uncomfortable, and which have an explanation, but for which no treatment is indicated. In that case, the patient can feel that he is “sick” but the physician, because the condition is a subtle one, not requiring treatment, considers the patient to be healthy rather than sick.

          The difficulty arises when patients who do not have a condition which requires treatment, expect doctors who are very busy (see my comment above about primary care doctors and 22 hour days) to spend time thinking critically about what might be going on so that the patient can have an explanation for symptoms that don’t need treatment.

          This might be a nice thing for doctors to do, if they had the time to spend approaching each of their patients in a scholarly fashion, which our current system does not support or expect. I don’t agree that it’s a reasonable expectation to have of the ED, where their job is really to treat emergencies, not subtle blood chemistry abnormalities which don’t need treatment.

          • rbthe4th2

            Just wanting to report, I did look to schedule a time, gave the 3 most important articles, and left it at that. A few days later he got back to me, and gave me his decision. It was half way between what I was looking for and the articles suggested, but I was happy with that. There was enough there to “help the cause”. I think the next time if I have one or two articles, I will present that. I also stated to him I will read peer reviewed type literature, and don’t intend to give him anything but that. So he knows I will look for material that he can feel comfortable with using. I had another doc like that, gave him one peer reviewed article. He actually read it through and thanked me for it. This is the sort of relationship I enjoy: if I give you scientific, peer reviewed literature that I peruse and feel this applies to me, and you’re willing to give it a glance, I’m fine with that.

          • azmd

            I am glad to hear that it worked out well. I would like to think that most doctors would welcome the opportunity to have a thoughtful conversation with their patient if they are given time to prepare.

            It is unfortunate that it’s not something we can do on the spot any more, but I honestly think that the fact is that medicine has evolved past the point where none of us except maybe someone who is very highly specialized, like a surgeon who just does one type of procedure, can really be in full instant command of the literature on a given topic.

            I notice that doctors are getting a better comfort level with admitting this, though, which is good. The other week I called our pediatrician about a relatively obscure genetic condition that I wondered if one of my children should be tested for. In the course of the conversation I was pleased that he said quite undefensively “I’m sure that you know more about this condition than I do at this particular moment.” There should be no shame in any of us making that admission to our patients.

          • rbthe4th2

            Thanks AZMD, always enjoy hearing your response.
            If I want my doc educated, then I should use their materials. Why should they put their butt in the sling for garbage on the net? If I truly want to get better health care, then I need to invest not just in my own education, but helping my overworked doc too.
            Especially because any doc in primary care gets paid the least, have the most paperwork hassles, and deserve a helping hand. They’ll be on the front lines dealing with Obamacare too.
            Nothing against specialists, I’ve had some awesome ones. It is obviously more so the personality – although surgeons are a totally different animal … {sigh}

  • bill10526

    There are three problems with patient empowerment. The most important is that the patient is not a disciplined observer. He will tend to remember events supporting his notions and downplay events contradicting his notions. It’s a “being human” thing. During the Love Canal debate, a researcher from Roswell Park foolishly said that the number of adverse events at Love Canal proved that there was a problem. The State of New York did a careful examination of area around Love Canal with precise measure of exposures and found no evidence what-so-ever of harm.

    Then there are the Internet and media health shows. One fellow was so into heavy metal poisoning that he put his son through a horrific treatment to “cleanse” the boy. It was a Florida case, and I remember the boy dying. The consulting doctor was a well known Quack.

    Thirdly, the doctor spent a lot of time, work and money in his systematic training. His training should be given more weight than a Google Search.

    I am in favor of sharing information with the patient to the extent the patient can understand it. Understanding of one’s body is a good in itself.


    • Brit

      But who are you to determine at what level the patient can understand the material? On what basis are you making your judgement that the patient can or cannot understand the material that you, a clearly more intelligent being, have in your possession. You comment reeks of disregard for your patients and you clearly see yourself as superior to them. It’s funny you state that a patient is “not a disciplined observer” due to the phenomenon that’s called cognitive bias, which you call “being human.” Are doctor’s somehow magically immune to cognitive bias once they receive their MD? Wasn’t this “quack” that cleansed the boy in Florida that you cite above an MD who is supposed to be free from cognitive bias? And lastly, no one is equating patient empowerment with a google search. You are the only one doing that.

  • rbthe4th2

    I think if they communicated what I did in my previous post, that they believe it is X, Y or maybe Z, they want to watch the situation as it doesn’t require treatment at the moment, and here is what you need to tell me or the ER if things go worse: sign 1, 2, 3, that would alleviate the problem all the way around.

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