Top 5 myths about empowered patients

Irrational exuberance was a term once used to describe the stock market before the last crash.  It also seems an apt description for much of the talk these days about empowered health consumers.

To be sure, patients today have unprecedented access to health information.  Patient decision-support tool can be found on just about every provider, payer and self-insured employer website.  Consumers can go to any number of websites to find quality data about hospitals, physicians and health plans.  Personal health records (PHRs) promise to make our personal health data portable for meaning that all our treating physicians will be “singing off the same song sheet.”

That’s what the industry experts tell us.  But what’s really going on?  Here I will describe what I see as the top 5 myths about empowered health consumers.

Myth #1: All patients are empowered or becoming empowered

Since pre-internet days (early 1990s), health behavior research has shown that about one third of adults desire above average health, one third are satisfied with average health, and one third don’t care one way or another.   Not surprisingly there is a direct correlation between one’s health aspirations and the degree to which one engages in activities typically associated with “empowerment, i.e., health information- seeking, exercise and good nutrition, and so on.   For example, people who place a low priority on health related activities for example often have an external locus of control.  This means that they don’t believe they can do anything to change their health destiny.

Using health information-seeking as a proxy for empowerment, it does not appear that people are significantly more inclined to seek health information today than they did during pre-internet days.

Myth #2: Most patients choose to be empowered

Are patient empowered because they want to be or because they are forced to be out of necessity?  It is noteworthy that much of the research on patient empowerment comes from research pioneered by the National Cancer Institute.   This suggests a causal relationship between one’s condition (cancer) and how one reacts to it (information-seeking).  This trend subsequently spread from cancer care to all health care as physicians started to increasingly delegate health responsibilities to patients…without asking them, telling them or teaching them how to engage in these responsibilities.   Just ask any primary care physician involved in a medical home conversion.  Anecdotal evidence suggests that a good number of patients, when told of their new personal health responsibilities, respond by tell the doctor that “that’s your job.”

To be sure, a fair number of patients have become quite competent at managing their own health.  But it would be a mistake to assume that everyone is equally predisposed or capable of doing so.

Myth #3: Health information-seeking ≠ empowerment  

Almost 80% of adults go online to seek health information according to the Pew Institute.   There is a tacit assumption in health care that information- seeking is synonymous with empowerment.  Yet information alone is not enough to change a person’s health behaviors, i.e., make them empowered, according to leading health care experts like Thomas Bodenheimer, MD, self care management guru Kate Lorig, and others.  Factors such as the person’s skills, self confidence and knowledge of how to navigate the health system are also important pre-requisites of behavior change.

It is worth noting that for some people; too much information can be disempowering resulting in too many choices and decisions.

Myth #4: An empowered patient trumps the doctor

Nothing shuts down an empowered patient any faster than a physician who is short on time and communicates with patients using a physician-directed communications style (versus patient-centered).   As it is, the medical exam process does not afford patient much of an opportunity to speak without interruption.  As such most patients, including empowered patients, ask very few important questions.

Anecdotal evidence suggests that the longer one waits in the office to see the doctor, patients are moved to ask fewer questions in the interest of the doctor’s time.

Myth # 5: Empowered patients are at odds with their doctor

Empowered or not, patients and their doctors disagree on a fair number of important issues including reason for the visit, diagnosis, treatment options, amount of information desired, communication preferences and so on.  So disagreements are probably not the cause of the impression that being empowered equates to be obnoxious.   Rather the trick for the most empowered among us is to be able to disagree without being disagreeable.

Steve Wilkins is a former hospital executive and consumer health behavior researcher who blogs at Mind The Gap.

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  • http://twitter.com/ePatientDave Dave deBronkart

    Can it be true that there are no comments here??  I’ll try to be brief…

    First, when this appeared last night some tweeps were sure I’d be stomping and storming. But for the most part, I think you’re right.

    > Myth #1: All patients are empowered or becoming empowered

    Holy cow, who said that??  Outside of us online activists, hardly anyone I ever run into bears any resemblance to a question-asking responsibility machine. (On the other hand, the same can be said about any movement, any social change, in its early days. The main issue is that most people don’t have any idea it’s even *possible* to step outside their pen.)

    > Myth #2: Most patients choose to be empowered

    Your discussion strikes me as valid, but it depends on what one means by empowered. “Willing to speak up, at all” is a lot different from “Responsibly generating their health plans and following them.”

    One of my formative moments years ago was when I asked a plastic surgeon if there would be a scar after he removed a basal cell from my nose. He got mad. I was simply being “Consumer Reports” empowered, saying what was on my mind. It hadn’t occurred to me to research other options or even ask about them, which today is pretty much first base for an empowered patient.

    > Myth #3: Health information-seeking ≠ empowerment 

    Yep. When “Doc Tom” Ferguson coined the word e-patient in the 90s, online patients were the pioneers, inherently empowered and engaged. Today almost everyone is online, including disempowered people and idiots. Googling “cancer” does not make one empowered.

    Pew’s actual figures are that 75% of adults are online, and 80% of them seek health info, so 59% of US adults seek health info online. Regardless, as you say, seeking info is not empowerment.

    > Myth #4: An empowered patient trumps the doctor

    I’m stymied on this one. What’s “trumps the doctor”? Do you mean an e-patient calls the shots, and the doctor gets vetoed? hahahhaha… :-)

    For the record, participatory medicine is about a partnership (hence “participatory”), not dominance…. the patient becomes responsible for his/her care, but as someone who was saved by a great oncologist, a superb urologist/surgeon (bare hands laparoscopic magic!), and an awesome orthopedic surgeon, I can tell you, at no time did I tell them what to do. :-)

    > Myth # 5: Empowered patients are at odds with their doctor

    Ibid. And thanks for pointing out that speaking up is not inherently oppositional.
     
    Good piece, as I say.  

  • Steve Wilkins

    Dave,

    Here’s my definition of empowered.  There are three criteria: Someone is empowered when they have
    accumulated: 1) the knowledge, 2) the skills, and 3) the confidence to
    effectively engage in behaviors need to achieve a personal health goal. (Modeled after Kate Lorig’s thinking about self management).

    I suspect that there is a natural progression (irrespective of
    disease condition) which patients must pass through – kind of like the
    Kubler-Ross Stages of Loss Model. In other words a newly diagnosed type
    2 diabetic cam not be said to be empowered simply by going on line to
    look up information. While a necessary first step (knowledge building),
    information alone is not enough to change behavior. To progress, the
    physician (or the team) needs to teach the patient the skill necessary
    to effectively manage their condition, i.e., monitor their A1C, modify
    their diet and so on. Then the patient has to gain confidence by
    exercise their knowledge and skills over time – ideally under the
    supervision of their medical team and with peer support (from other like
    patients). Let me reiterate, information seeking (going online to
    look up information) alone does not constitute real empowerment as so
    many people believe. From my experience with cancer patients,
    information seeking can be a way of avoiding having to make a decision –
    similarly too much information seeking can become disempowering as I
    pointed out in my post.

    That’s my 2 cents. Any other opinions?

    Steve Wilkins.
    http://www.healthecommunications.wordpress.com

  • http://www.facebook.com/rolf.olsen Rolf Olsen

    I very much appreciate this piece.  I regret that this comment will probably ramble stream-of-consciously, but I hope I can make a few useful points in these moments before I start my work day as a ‘health care marketer.’
     
    Back in 1986, when my wife gave birth to our second child, a daughter, who was only able to live for two days due to anencephaly, we learned the urgent need for patients and families to be their own best advocates, asking the important questions, because there was no one else to do it for them.  I mark that point in time as the start of my own empowerment as a consumer of medical services.  Fortunately my wife and I have the benefit of college education and being born inquisitive, and with at least modest middle class resources to explore – as well as a dose of good luck.  Here are a few key anecdotes from our experience.
     
    Prior to her pregnancy, my wife had been diagnosed with arthritis in her knees.  The doctor prescribed a medication called Clinoril.  Knowing we planned on a second child, we asked the rheumatologist about possible consequences if my wife should become pregnant.  He dutifully checked his PDR and told us, “There is no evidence that Clinoril causes birth defects.”  Sounded good to us at the time.
     
    My wife did become pregnant and during what turned into a difficult pregnancy, we were told after a sonogram that our child would most likely be born with spina bifida.  This seemed to be confirmed by the results of amniocentesis.  Remembering my petite wife’s difficult labor with our first child, a healthy son, we wondered about the possible rigors of vaginal childbirth on a child with some possible exposure of the spinal cord.  Our doctors had no information about this, but my mother, living in the Seattle area, was in a hiking group that also included the wife of a physician at the University of Washington who was, in fact, doing research on the topic of vaginal childbirth versus C-section in cases where a child is born with spina bifida.  We were able to talk directly with that doctor and also put him in touch with our own local physicians.  (Remember, this was 1986, before the Internet was available either for patients to explore, or for the broad and immediate dissemination of research findings.)  This is where “luck” came in for us.
     
    In the end, our daughter Liesl was born in an emergency C-section, but as I indicated at the outset, her neurological issues were extensive and, in fact, didn’t even include spina bifida.  She was born with virtually no brain tissue, no optic nerves, and numerous other deficits that made life impossible.
     
    In the course of our grieving, we also participated, along with our doctors, a genetics counselor and others, in an exploration of possible causes.  None was ever clearly identified.  But remember the Clinoril my wife was taking at the time she became pregnant, and her rheumatologist told us there was “no evidence that Clinoril causes birth defects”?  It turns out that the correct answer was that there was no evidence one way or the other.  Clinoril was prescribed mostly for women who are no longer in their childbearing years, so the issue of possible birth defects was never explored.  While it’s true that the response from the rheumatologist was not incorrect, it was also not fully correct.
     
    So that’s why now, some 25 years later, I am almost an evangelist for empowered, enlightened and otherwise self-resourceful patients.  But I’m also mindful of the fact that we have a large population in our country without the educational, economic and other benefits that have made our particular journey possible.  In these ensuing years, we’ve faced other significant medical challenges – my heart attack and my wife’s cancer ten years ago – and I’ve been extremely grateful for the lessons taught to me by a little girl who only lived for two days. 
     
    Now that I’m employed in a large academic medical center, in the functional area that’s, in my opinion, mistakenly called “marketing,” I find that much of my time is spent translating clinical messages that are full of jargon and provider-centric attitudes into messages that will actually help patients successfully navigate our often arcane systems, often under very stressful circumstances.  After all, many people who end up here are here because they’re very sick and worrisome.
     
    Perhaps the most important lesson I’ve learned is that effective communication is central to health care that is safe, effective, efficient, and patient- and family-centered.  It’s also central to empowering fully engaged patients and families.  Ironically, in my experience, the value of successful communication, where the intended message is congruent with the message received and understood, is not recognized by institutions that are so otherwise engaged by the challenges of changing regulatory landscape and the louder voices of risk managers.  Until institutions fully recognize the value of communication, the concept of empowered patients will remain elusive.

    • Anonymous

      Thank you for sharing your story, and the very important message that effective communication between patients and their caregivers is a necessary component for positive medical outcomes.

  • Anonymous

    Consumer is an insulting term for patients.  To consume, etymologically, means to destroy.
    Patient is more respectful of the experience of one who suffers, and is etymologically reflective of this.

    No suffering?  Not much need for a doctor.

    That said, I think there is much room to consider reintroducing market forces back into the physician/patient relationship …  another important application of empowerment, and one that can impact the cost of healthcare..

  • Anonymous

    I would love to know the author’s opinion of the “ePatient” also known as the empowered patient.

    I agree with much of what ePatient Dave said below. Though I’d push further as to inquire why post on the myths of an empowered patients when it’s much more beneficial to all stakeholders in health care to hear about the truths of what an empowered patient stands for.

    *sigh* Perhaps I’m a bit mad to hope that there will come a day when empowered patients are not eyed like annoying mosquitoes to be swatted to silence. We are essentially individuals who care about our health enough to understand it takes more than just the physician to make things happen. 

    Steve I disagree with your opinion on patients not being empowered by searching for information. It is often in that search that they do. I am proof of that and I know countless others who have gone on to become champions of their own health and the health of others.