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'Patient Engagement!' Our Skin is in the Game


The idea that we should actively participate in our health care now attracts attention akin to the discovery of a cure for the common cold.

Here's how I learned about patient engagement:

On my 20th birthday, I was diagnosed with Hodgkin Disease and spent considerable time on life support while my doctors tried to halt the cancer's growth. I was devastated. I was just a child. I thought, "I can't die now I'm just beginning!"

After I was well enough to go home, I began the daily trek to the hospital for weeks of radiation treatments, followed by two years of debilitating chemotherapy.  I was skinny.  I was hairless.  And I was non-compliant.

Each time the doctor administered my chemotherapy, he would direct me to take six pills daily at regular intervals for the next two weeks.  I didn't do it.

One day I might take two pills.  Or six all at once.  Some days I took none.

My doctor warned me to stay home because my immune system was at low ebb and I was at grave risk for infection.

I went out dancing.

I now look back at my behavior in awe and disbelief: millions of dollars worth of biomedical research was distilled into the knowledge and experience and procedures and drugs aimed at a disease costing hundreds of thousands of dollars to treat, which ultimately largely relied on the actions of weak, skinny, scared adolescent ' to have its impact.'

And I really struggled to make it work.

I was desperate not to die. But I couldn't follow my doctor's exacting plan.

Why?  Well it was 1972 and there were no anti-emetic drugs, which meant that I threw up every 15 minutes for 48 hours each week. My creative approach to pill-taking was an attempt to find some brief respite from the physical torture ' an hour of sleep, perhaps?

And I was young, deprived for months of friends and fun, longing for a sign that I might someday have a normal life. How could a few hours of dancing hurt me if I was careful?'

I was engaged in my health care no doubt about it.  I spent hours scheduling tests, sitting in waiting rooms, finding new specialists, filling prescriptions, ferrying records from doctor to doctor, urging them to communicate with one another and receiving treatments. But sometimes short-term needs crowded out the long-term rewards of strict compliance with my treatment.

Since then, I marvel at the energy and effort I have devoted during my three subsequent cancer diagnoses to organize my care and follow the recommendations of my small army of doctors. And I am amazed that, despite my knowledge, experience, confidence and commitment, I can still fall so short of doing what is recommended to save my own life.

The lesson that I take from my experience as an engaged, serial non-complier and that I have learned from the hundreds of people I have interviewed about their experience with health and illness is that engagement in our health care means we are trying over time to make the best possible use of health care services and technologies available to us.

This means that sometimes we have the wisdom, ease and discipline to take the long view: We exercise, eat modestly and keep tight control of our blood sugar now because we know it will benefit our health over time.  Sometimes immediate stresses crowd out our good intentions: We delay getting the colonoscopy because it eats up a whole day and our jobs are already on the line. We choose to buy groceries rather than this month's supply of blood pressure medication.

There are a few health care leaders who understand that engagement does not start and end with adherence to treatment.  Judy Hibbard's Patient Activation Measure encourages professionals to plan interventions based on an assessment of our overall confidence in participating in preventing and treating disease. Kate Lorig's Chronic Disease Self-Management Program gathers peer support and advice to help those with chronic conditions do the full range of tasks required to care for themselves.  Victor Montori and his group at the at the Mayo Clinic conduct research on minimally disruptive medicine.  David Sobel, at the Permanente Medical Group, develops programs and trains staff to help patients integrate the demands of their treatment into their busy lives.

But this expansive understanding of engagement is far from the norm.

There is growing recognition of our vital and considerable role in our health care being sparked by new policies that link payment for services to outcomes and our experiences: pay for performance and other incentive programs for primary care clinicians; shared savings via Accountable Care Organizations; Medicare payment policies to prevent re-hospitalizations; patient experience of care ratings. Each of these nudges at clinicians and institutions to set in place practices and policies that will reward them to help us to participate more actively in our care.

Nonetheless, I have two persistent concerns about the way many professional stakeholders currently address patient engagement.

First, that programs to engage patients (or employees or members) in their health care target only very specific behaviors: Lose weight.  Be physically active. Control blood sugar.  Fill in the health risk appraisal.

And second, that engagement is most often equated with compliance. Increasingly, we must do these behaviors or we will be fired by our primary care doctor or will pay extra for health benefits.

Engagement does not mean that we comply exactly with specific directives. Rather, it means that we act to the best of our ability to find and make good use of the health care available to us. The range of actions that we must take to benefit from our care far exceeds those few targeted behaviors:

  • We must find the right doctors to care for us, consult with them, coordinate communication among them (in the absence of transportable electronic health records) and pay for their services.
  • We must, with our clinicians' help, make informed decisions about care, participate in developing treatment plans and then implement our part of those plans over time.
  • We must educate ourselves and act judiciously on what we learn about prevention, care for minor illnesses and attend to danger signs that indicate that any further delay in seeking care is dangerous.

Being engaged in our health care means trying to do all of this. Indeed, each of us must do all these things at some point if we are to realize the benefits of our health care.  And we must do so even though we may be ill or frail or lack skills, knowledge or confidence.

We will not always be able to keep our eyes on the prize as defined by our clinicians.  But we can be greatly helped by knowing what options we have, what they cost in terms of time and money, and how they may affect our ability to work and play.  We most often lack this information. Sometimes we need skills training to manage our symptoms and use our drugs and devices safely.  All of us do better working with trusted, knowledgeable clinicians who help us set priorities and problem solve with us about how to care for ourselves and those we love.

I am alive today because I have been engaged in my health care.  Without my efforts, all that beautiful science, all those marvelous innovations the surgeries, the drugs, the devices -- all my clinicians' experience and advice would have no effect.  I have to do the best I can to show up, get the tests, eat as directed, take the pills, follow the advice and coordinate my care or I will not realize the benefit.

Trust me, our skin is already in the game.

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

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Patient Engagement   Jessie Gruman   Participate in your Treatment   Inside Healthcare  

Comments on this post
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Celeste Lee says
February 8, 2012 at 3:57 PM

Bravo for a courageous post.

Dan Airely's work in behavioral economics is also at work here. Predictably Irrational. I too am an engaged patient, but at times even though I know what I should do... how I should behave... what should go into my mouth.. I do not always behave in my best interest. Call it irrational, rational rebellion or just plain fatigue.

The balance of my behavior is overwhelmingly compliant (in 30 years I have never missed a dialysis treatment) and because I have kidney failure I should not have any dairy or cola drinks. I must admit sometimes I have a skinny cow (diet coke and vanilla ice cream) luxuriating in the cool creamy carbonation while feeling guilty because several researchers have proven that I have just raised by phosphorus level --- which is bad.

The opportunity is getting patients engaged, the challenge is keeping them engaged-- the beauty is an engaged, educated patient who is self aware enough to know that today they are deviating from the plan "in moderation" diligently getting back on the program tomorrow. You must be know the rules of the game before you can break them.

Celeste says
February 8, 2012 at 6:34 PM

Doctors take years of training to become specialists and start practicing medicine. Have you ever wondered when they're going to stop practicing and do it for real?

I know its a corny old joke but the point is that patients don't get any time to practice. Once you're told you have a serious illness you get thrown into the game right away. You're left to fend for yourself against the 35,000 word vocabulary that doctors graduate with from med school. But you don't get an opportunity to go to med school for years to balance out the inequality.

I once compared compliance to slavery. Follow the rules - explicitly - rules you had no hand in shaping. And at times I have been "compliant". At the same time, I've been human and subject to the foibles and frailty of the human condition, compounded by the stresses of daily life the normal world throws at me as well as the additional stresses of daily life living with a chronic illness. Between the physical stresses and the emotional stresses complicated by medication side effects, relationship interactions, survival tactics, the yearning for normality and the plain desire to just get my life back, my behavioral patterns aren't necessarily totally predictable.

So is it any wonder that I might act in ways that may be against my overall interest? I've studied The Patient Activation Measure and applaud its value as a practitioner's tool. At least the doc has something that follows the protocol of their training. And that is very important as doctors often don't take anything seriously unless it does.

But after 30+ years of living with a chronic illness, the P.A.M. isn't a linear journey for a patient. Some days I'm no more advanced than I was 28 years ago. Other days you'll find me at level 5 on the scale even though it only goes up to level 4.

Many days I yearn for something simpler. I dream about the days of Marcus Welby and doctors who made home visits. I have this fantasy that medicine is no longer about science but it's about the core of my humanity. I long for the doctor who will see me for who I am, listen reflectively to my story - not my history - enter imaginatively into my narrative and poke around like Lewis Carroll and magically touch the source of my dis-ease....

Other days it's like the movie "Groundhog Day" with Bill Murray who wakes up every day and its the same day, replaying itself again and again. Just as the struggle with controlling my own behaviour is ongoing. For many patients, the concept of "engagement" takes on many meanings. You've touched upon a much needed discourse.


susan256 says
February 8, 2012 at 11:05 PM

Excellent post Jessie. You hit the nail right on the head. Now if we can only get the health care system to be honest with us about costs. I've asked what certain procedures or tests cost on a number of occasions and you would have thought I was speaking in a foreign language. Health care cost transparency is what the American health care system needs so that patients can make informed decisions.

“Patient Engagement!Ă¢?? Our Skin is in the Game | The Doctor Weighs In says
February 14, 2012 at 5:16 PM

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