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Our Experience Trumps Policy in Changing Our Health Care Beliefs


Every day in the U.S. countless experts discuss plans and policies to contain the cost of health care using words and concepts that run counter to our (the public's) experiences with finding and using care. Most of us ignore the steady stream of proposals until one political party or the other crafts an inflammatory meme that resonates with our fears of not getting what we need. At which point, we leap into action online, in town meetings and in the voting booth. As Uwe Reinhardt noted in his Kimball Lecture at the recent 2011 ABIM Foundation Forum, researchers and policy makers cannot even discuss the cost-effectiveness of health care without being called Nazi(s).

Our discomfort with the array of private and public sector proposals to improve health care quality while holding down costs should not be surprising. Most of us hold long-standing, well-documented beliefs about health care that powerfully influence our responses to such plans. For example, many of us believe that:

' if the doctor ordered it or wants to do it, we must need it.

' talking about less expensive treatments makes us feel that others are trying to bargain-shop our care and that scares us.

' clinical care does not vary much among our own doctors and hospitals.

' when we talk about the 'quality' of health care we are referring to the kindness of staff, cleanliness of facilities and convenience of transportation, not the effectiveness of the clinical care.

' we don't like the use of commercial-sounding words (consumer, value, efficient) to describe our health care.

Since most of us are mostly healthy most of the time, few of us have the time, experience or motivation to face the uncertainty, learn the jargon and make the effort to unravel the complexity of health care delivery. So these common beliefs not only affect our response to proposed policy modifications, they also shape how we approach the care we and our families need: when we seek it, whether and how we participate in it and the outcomes we expect from it.

Consider some implications of these beliefs:

  • Because we resist the idea of bargain shopping for physicians or hospitals, convincing us that health care under Medicare could improve (or stay the same) for a cheaper price is a heavy lift. Witness our responses to date to any politician's suggestions that would result in payment cuts for that program.
  • Despite considerable work by physician groups to reduce unnecessary care, patients will be reluctant allies in curbing overuse and over-treatment. It won't occur to most of us to question the risks and benefits of getting a CT scan for our back pain or continuing our use of Coumadin, since most of us think that our doctor wouldn't order either one if it wasn't necessary.
  • Because we don't believe that care varies much among physicians and hospitals and thus don't recognize the risks that accrue to those variations, clinician referrals and recommendations of friends will remain the most legitimate and popular ways to find care. This belief undermines the hope that public reporting of quality measures for hospitals and physicians will serve as a 'wedge' to produce changes in our demands that in turn drive improvements in the quality of both.

What will compel these necessary but uncomfortable changes? It is doubtful that an advertising budget the size of Coca-Cola's would be sufficient to successfully shift the majority of population's knowledge, critical judgment and motivation. Even the ubiquity of health information online and on the airwaves has only modestly affected the persistence of these beliefs over the past decade. So while government-sponsored public education efforts that urge us to ask questions about our care may prompt some queries, we continue to ignore messages that tell us that the familiar local hospital may be less safe than the one down the road or that we may not need that back surgery.

The single strongest determinant of the changes in beliefs and behaviors required for us to take on the new responsibilities of choosing and using health care wisely will be the involvement of our clinicians.

From our clinicians, all of us our aging parents, the single mom with four kids we saw in the grocery store and the early birds at the dialysis center will hear that it is OK to ask questions when we don't understand how we are supposed to care for ourselves. Or not. From our clinicians, we will learn that there are different short- and long-term risks, benefits and costs to the tests and treatments available to us. Or not. With our clinicians, we will make decisions that are consonant with our values and beliefs. Or not. In discussing vaccines, physical activity and smoking with us, our doctors will or will not help us understand the connection between our health and the health of the communities in which we live.

To us, this is how the principles and commitments in Medical Professionalism in the New Millennium: A Physician Charter will be embodied: through our interactions with our clinicians in the office, in the hospital bed, on the phone and in e-mail exchanges.

Most of us will not change our beliefs about the variability and uncertainty of health care by reading media reports about jargon-laden policy options. Rather, we will come to understand them when they become important to us: when we seek help to ease our suffering; when we pay close attention to someone we respect and trust who can help us do so; when we feel our concerns and our own experience is valued and understood. We need our clinicians to invite us to join them in making wise choices about how to care for ourselves and our families.

Will these experiences lead to more nuanced public participation in the public and private policy debates that will wash over the nation in the coming months with the implementation of the Patient Protection and Affordable Care Act or its dismantling by the courts? Probably not. But over time, they have the potential to build our capacity and confidence to make wise choices about our health care, together with our clinicians and on our own, that will enable us to live as well and as long as we can.

This piece first appeared on the ABIM Medical Professionalism Blog on September 8, 2011


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   Communicate with your Doctors   Inside Healthcare  

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