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Whose Patient Engagement Goals Are We Talking About?

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What we look for when we participate actively in our health care differs from what our clinicians, employers and health plans believe will result when we shift from being passive to active participants.

We don't have the same goals in mind. Does this matter?

Ask patients who use the phrases "patient engagement," "patient participation" or "patient empowerment" about their goals and we talk about having some measure of control over our health and health care. Sometimes we say we want to be better informed or make more decisions about our treatment. Sometimes we say we want a more respectful relationship or partnership with our clinicians. Sometimes we mention taking on more responsibility for caring for ourselves. Always, the comments directly or obliquely signal that our goal is to learn about what's going on with us and what the tools of health care can do for us.

Does the price of health care come up when we discuss what we want to gain by participating in our care? Occasionally.

Do we talk about the quality of our care when we focus on getting care that feels right for us? Not specifically.

Is the contribution of our health to the overall health status of the community or a health plan's membership or a primary care doctor's panel mentioned? Never.

Based on my conversations over the years with people about their participation in their health care, my impression is that we engage in our care in order to customize it to meet our individual needs and preferences – to make sure that whatever we are getting is the best possible choice for us.

I have recently interviewed a raft of people who aren't patients but who have clearly identified themselves as stakeholders in promoting people's engagement in their health care. They include health plan administrators, clinicians, employers, government scientists and vendors.

When I ask, "What difference does it make when we are engaged in our health care?" their answers cluster around their beliefs that greater patient engagement reduces the cost of care, improves the quality of care and enhances the overall health of whichever population the stakeholder is responsible for.  A few interviewees give a nod to the benefits of engagement that will accrue to an individual and/or her caregivers.

This divergence of aims between patients and those who organize, deliver and pay for our care doesn't alarm me on most days. Each stakeholder is working to standardize incentives, processes and programs that they believe will provide the best chance for the greatest number of us to get care that is safe and effective. On average, I am grateful.

But I know that these stakeholders don't view patient engagement as an expression of our individual needs and preferences. Rather, for most of them patient engagement is synonymous with our compliance with our clinicians' evidence-based recommendations to lose weight, control our blood sugar, use prescription medications as directed and abstain from frivolous use of the ER. For them, our engagement in our care is the expected consequence of believing that scientific evidence shows – and our clinicians know – that certain behaviors and treatments will produce the best outcomes for most people. They are convinced that any rational individual will act consistently with that understanding. Many narrow-minded economists would agree.

Some professionals have sounded alarms about this conflict between the goals of patients and the goals of health care. Victor Montori at the Mayo Clinic talks about how well-intentioned pay-for-performance measures saddle patients who have multiple chronic conditions with phone book-sized to-do lists and punish their doctors when they don't follow them. Jerome Groopman and Pamela Hartzband write about how evidence-based cancer care crushes hope and undermines care that's tailored to an individual’s preferences and needs.

Much of the time, our preferences and needs align roughly with the guidelines, evidence and professional advice we receive. But the concordance varies between our behavior and expert guidance both within and among individuals. And our engagement wouldn't be a concern of most non-patient stakeholders if that gap wasn't significant.

It's time to take seriously these early warnings about the damage that can be done by these disparate goals. When we share with other stakeholders the language of patient engagement but not the aims, we all risk bitter disappointment.

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman


Tags for this article:
Patient Engagement   Communicate with your Doctors   Medical/Hospital Practice  


Comments on this post
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Carolyn Thomas says
April 21, 2013 at 10:54 AM

Thanks, Jessie, for this brilliant summary of that yawning gap between the goals of patients and those of health care.

Drug compliance (that awful word!) is a good example: the loudest champions in figuring out how to get people to take the meds their doctors prescribe are not the doctors themselves, but the drug companies who estimate they lose at least $30 billion in lost sales every year due to non-compliance (with some putting that estimate even higher).