Defining patient engagement

Everyone in health care is talking these days about patient engagement, but a funny thing happened on the way to the discussion: There doesn’t seem to be a widely agreed-on definition of what this actually means.

When the National eHealth Collaborative recently released the findings from an online survey conducted in February, the responses were all over the map.

Some thought patient engagement meant the ability to email the doctor, make an appointment online or have online access to the medical record. Others thought it meant access to educational information about health. Some thought it meant a willingness and comfort with asking questions or challenging the doctor’s recommendations.

Virtually everyone who responded to the survey said it was either “important” or “very important” for patients to be engaged in their care.

But how can patients be expected to do this when no one is sure what patient engagement is supposed to look like?

If the survey accomplished anything, it was to shed some light on the lack of widespread consensus and to identify the beginnings of some common points of agreement.

Of the 185 people who took part in the survey (admittedly a very small sample size for drawing any meaningful conclusions), the description on which they agreed the most was “Patient uses educational material and online resources to learn about better health or their own health conditions.” This was closely followed by “Patient uses tools and resources to manage his or her medical record and other health data.”

I was interested to note that “Patient feels comfortable challenging doctor when something doesn’t seem right or when explanations are not clear” ranked third among the responses picked by the survey participants. Does patient engagement mean it’s OK for the patient to disagree with the clinician, then? Plenty of folks would say that engaged patients are the ones who go along with whatever the doctor recommends (and sure enough, 22.7 percent of the survey respondents said “Patient follows their doctor’s orders after a visit” was a sign of an engaged patient).

Since this was a survey carried out by the National eHealth Collaborative, it isn’t surprising that health information technology was seen as a critical piece of patient engagement. But is this the most important ingredient? Can someone who doesn’t even own a computer still be an engaged patient?

What about concepts such as active participation by patients in their health care? Or commitment to learning more about their health at whatever level they’re comfortable with? Or self-management and shared decisionmaking?

More negatively, does patient engagement mean patients will start dictating the terms of their care, even when what they want is medically inappropriate?

And who gets to define patient engagement, anyway? Does this rest with patients alone? With providers? With both of them together?

Here’s how Donna Cryer, CEO of CryerHealth, defines it in a post she wrote last year for the Prepared Patient Forum at the Center for Advancing Health:

Properly done, patient engagement in action looks like shared responsibility between patients (and their families if applicable), health care practitioners (the entire team: surgeons, physicians, nurses) and healthcare administrators (providers of the infrastructure and payment models) to co-develop pathways to optimal individual, community and population health. Patient engagement brought to life means involving patients and caregivers in every step of the process, providing training or financial support if necessary to their participation.

An infographic put together recently by Steve Wilkins of the Mind the Gap blog offers further insight into some of the challenges of defining patient engagement. Simply giving patients access to information doesn’t mean they’ll know how to use it, he writes. And measuring engagement by the patient’s willingness to ask questions and challenge the doctor fails to account for the time constraints in the exam room or the lack of confidence many patients feel in speaking up.

The role of the patient is being redefined in ways that are more far-reaching than perhaps any other time in history. Traditional power structures are being upset, and this can be unsettling to patients and providers alike. Although it may be tough to reach a consensus on what the core principles of patient engagement should be, it’s important to the process – and yes, engagement means patients should be part of it.

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