Twenty percent of people who leave their doctors’ offices with a new prescription don’t fill it. Up to half of those who do fill their prescriptions don’t take the drugs as recommended. These individuals are considered non-compliant. But does that mean they are not engaged in their health care? “Engagement” and “compliance” are not synonyms.

I am compliant if I do what my doctor tells me to do.

I am engaged when I actively participate in the process of solving my health problems. A new prescription is an element in that process. If I am engaged in my care, I might want to learn about this medication, such as: What can it do and not do to ease my pain or slow the progress of my disease? What side effects might it produce and what should I do about them? How long will it take to work? When should I take it and how? How much does it cost? What will happen if I don’t take it?

I might want to consider the barriers to taking it and weigh the risks and benefits of alternatives. Could I instead make changes in my physical activity level or diet, try a dietary supplement, or watchfully wait to see if the symptoms subside?

If my clinician has done more than just hand me the prescription — if she has, for example, raised these questions and discussed these concerns with me, I probably won’t have a prescription in my hand if I don’t intend to fill it.

But I can be engaged in my health care even if I don’t have that conversation with my provider. I can ponder each of these questions with family and friends. I can search the library and Google for answers. I can consult online with others who have taken that medication. And sure, I’ll accept the prescription in case I decide to fill it. But I make no guarantee.

The rhetoric of engagement is attractive to all of us: patients, providers, hospitals, employers and health plans. That rhetoric says that patients have “choices” about our health care, that we are “empowered” to participate actively in our health care.

And of course, that it’s time we “take responsibility” for our health.

Many who speak about the need for us to engage in our health care confuse compliance with engagement. They assume that the only rational choice we can make is to behave consistently with our clinicians’ directives, whether that means filling a prescription, losing weight or undergoing surgery.

But this is not how many of us hear these messages. The rhetoric says we have choices? We hear, “You have the power to choose which doctor to consult and which advice you will follow.” It says we are empowered to find good health solutions? We hear, “Your Web searches and new friends online can help you figure out what to do as well as your doctor can.” The rhetoric says we are responsible for our health and health care? We hear, “You are on your own.” What we hear is reinforced by reality: a paucity of clinicians who encourage and welcome our participation in our care and office visits that rarely allow time for in-depth conversations.

Saying “engagement” when meaning “compliance” reinforces the belief that we are the only ones who must change our behavior. Doing so misrepresents the magnitude of shifts in attitude, expectations and effort that are required for all health care stakeholders to ensure that we have adequate knowledge and support to make well-informed decisions. And it fails to recognize that our behaviors are powerfully shaped by many contingencies: money, culture, time, illness status and personal preference. Being engaged in our health and care does not mean following our clinicians’ instructions to the letter. Rather, it means being able to accurately weigh the benefits and risks of taking a new medication, stopping smoking or getting a PSA test in the context of the many other demands and opportunities that influence our pursuit of lives that are free of suffering for ourselves and those we love.

This blog post is an excerpt from “Slow Leaks,” Jessie Gruman’s book on patient engagement.

© Copyright 2013, Jessie Gruman

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