Five Myths About Empowered Patients Or E-Patients

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[tweetmeme source="Healthmessaging" only_single=false]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 Equal 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 Patient 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.

That’s my opinion…what’s your?

Sources:

Wilkins, S. et al. A New Perspective on Consumer Health Web Use: “Valuegraphic” Profile of Health Information Seekers. Managed Care Quarterly. Vol 9, No. 2, 2001.

Bodenheimer, T. A 63-Year-Old Man With Multiple Cardiovascular Risk Factors and Poor Adherence to Treatment Plans.  JAMA. 2007;298(17):2048-2055.

17 Comments

  1. Abby says:

    I’m an empowered patient by default. After physicians failed to diagnose a common life-threatening illness, even after repeated hospitalizations, I decided that my life depended on taking control of the process.

    So, I do my research. By the time I get to a doctor, I know everything that a textbook and recent literature can teach me about the condition we will be addressing, including likely differential diagnoses. I know, however, that textbook learning is only part of the story; clinical expertise is the other, and that is what I expect the doctor to provide. I respect this expertise.

    Doctors are my consultants, and I take their advice seriously. I expect them to answer my questions and to explain how they arrive at their conclusions. I don’t expect them to take care of me or to heal me or even to like me. I do demand to be treated with respect and dignity, and, sad to say, some doctors fall short of that bar.

  2. Karen Summey says:

    I, too, consider myself an empowered patient. It took only one instance of poor health care, particularly with life-altering consequences, to spur me into action as my own advocate, as well as becoming one for family members and friends.

    In addition to this, I have returned to college with a goal of working toward greater health literacy and better provider-patient communication for everyone. Many people who would like to take control of their health are ill-equipped to do so. Low general literacy, as well as low health literacy, are roadblocks for the majority. Most health information is written at a tenth grade level or beyond, and this is well beyond the capability of most patients. Moreover, many providers assume patients have a higher literacy level than they actually do, because most people can converse at one to five grade levels beyond what they can read. Short office visits often mean that patients are given written materials to supplement the personal interview. Unfortunately, many of those materials are not helpful. Understanding key issues is a beginning, but we have a long way to go.

  3. Pam Curtis says:

    This article really got me thinking, so I did a search. What I found was there are a lot of ways doctors are primed against patients. Frequently these are professional, psychological studies on “difficult patients.” The problem is when you’re a hammer, you can start to see everything as a nail. Doctors are problem-solvers. They expect to deal with problems at every patient encounter. However, it’s not fair to see every patient interaction as a problem. Here’s my list of pros & cons (and cons & cons) for patients when they deal with doctors (and links to the studies that support the observations). http://makethislookawesome.blogspot.com/2011/10/pros-cons-of-doctor-patient.html

  4. I always like to hear about how people’s experience with health care revs them up, rather than shutting them down, and these two comments are good examples. My experience as a person who has been treated for four different kinds of cancer and who has talked to hundreds of people about finding and using health care suggests that this response is unfortunately rarer than it is represented in blogs, comments on them, and the prevalence of advice to us to “buck up” by journalists.

    Steve gets it right and research by Judy Hibbard (e.g.http://www.hschange.com/CONTENT/1019/?words=Hibbard), and the Center for Advancing Health which I direct (e.g.,http://www.cfah.org/activities/snapshot.cfm) support his contention that many more of us will need to change our attitudes, beliefs and behaviors before the thoughtful engagement in their care these two commenters describe becomes the norm.

  5. southern doc says:

    Could anyone take a stab at defining an empowered patient? Thanks.

    • Southern Doc,

      Now that’s a great question! Here’s my definition: A patient or person is empowered when they meet the following criteria: 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.

      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.

  6. southern doc says:

    Thanks.

    I think it’s important to remember that we now have, and will always have, patients all along the continuum from “completely unempowered” to “completely empowered.” It would be a mistake to put all our efforts and resources into just one point on that continuum: we have to design a system that works for all patients.

    • You are absolutely correct that we need to address patients along the entire continuum. The trick will be figuring out the following question. If you have $1 to spend on “empowering” say the sickest type 2 diabetics where do you start? Do you focus on those patient most likely to “want” to become empowered, those least likely to want to become empowered or the ones in the middle? Keep in mind that you will need different communications and motivational strategies for each segment. This is not a one size fits all situation. In my work, I have found that tailoring information to each patient is important. It is possible to do.

      Steve Wilkins

  7. southern doc says:

    Exactly.

    I have a significant number of patients who have no computer, no job, no transportation, and sometimes even no literacy. What will empower them is very different from what would empower you or me. They are definitely in danger of being forgotten as medicine becomes more corporatized and more profit-driven.

  8. Great article and comments! Now we should start a thread on “empowered doctors” … hopefully soon.

  9. John Sweitzer says:

    My wife is very much an empowered patient; by default, I have become more knowledgeable but I am not sure I am fully empowered per Stephen’s definition but I have been blessed with very good health, so I have fewer issues to deal with, so far. One thing that has really changed for us (in our 60′s now) is that we seek out doctors who respect our ability to come in having done our homework and speak to us, not as peers, for we are far from that, but as consciencious patients who want the whole story with options.

    We left one practioner who said we could only ask about one symptom per visit and wanted us to sechedule another office visit for the other issue. He is probably not a bad doctor, just too tightly scheduled. The more informed patients need more consulting time.

  10. So many right-on points in this post, and what a necessary conversation! Whoo boy – have I ever been privy to (and sometimes part of ) many a heated discussion about definition, interpretation, expectation(s) and the reality of being an empowered patient.. which may or may not be the same as a Participatory Patient (!). I took a stab at articulating, from my experiences, an 8 point philosophy. I wonder if this resonates with anyone else. Thanks again Stephen!
    http://www.ability4life.com/2011/10/how-participatory-are-you-as-a-patient-or-caregiver/

    • Kathy,

      I don’t get hung up on the jargon…what ever you call it it involves people accepting the responsibility, gaining the knowledge and taking action for their own health. I like your 8 Points! Thanks for sharing!

      Steve Wilkins

  11. It appears continuing education is required for physicians to properly understand and interact with ePatients. Turning the tables, perhaps it’s the doctors who should use the Internet to understand more about what it means to be an empowered patient. Learn how to identify at least three categories of ePatients. (See link below.) Doctor’s appointments or medical records could have a note distinguishing ePatients; they may require an extra 5 minutes or so. Recognizing that they are very likely arriving with prior research, physicians can learn to listen compassionately and not jump to inappropriate conclusions when suggestions are offered. Additionally, displaying a poster that outlines the office ePatient policy came ameliorate apprehension.

    How Empowered Physicians Can Embrace e-Patients http://bit.ly/npJuJu

  12. Amen to that Steve. Thanks for props :)
    Kathy

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