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Top 5 myths about empowered patients

Steve Wilkins, MPH
Patient
October 10, 2011
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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

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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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