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Every day we hear about wonderful medical advances that offer the promise of better prevention, treatment and cures for disease. I’m struck however – both personally and in accounts of those I interview – with how much the impact of these advances depends on our willingness and ability to actively participate in our care.
Advances in surgery mean that we quickly return home from the hospital but are then in charge of the regimens that will return us to health. Similarly, the effectiveness of the drugs that have transformed HIV/AIDS, asthma and diabetes into chronic conditions rely on us to manage complicated regimens and make substantial changes in our behavior. The explosion of knowledge means that we often have a different specialist to treat each body part, leaving us to coordinate our care among them.
Americans appreciate the knowledge and skill of professionals who cure their illnesses and allow them to live well even with disease. But most of us don’t realize how much responsibility now rests in our own hands. In a 2007 study, University of Oregon researcher Judy Hibbard found that while 23 percent of respondents in a national sample had adopted new health-related behaviors, they were not sure they would be able to maintain them in the face of stress or health crises. The remaining 77 percent ranged from believing they could remain passive recipients of care, to having some facts but not having the confidence and skill to act on them.
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Jessie
Gruman
President
Center for the
Advancement of Health |
This is true despite health information everywhere that offers an extravagant smorgasbord of counsel. And it is true despite efforts by employers and health plans to use incentives, benefit design and access to premium health information to change the behavior of those at risk for poor health and with chronic diseases.
Our passivity is understandable. Not only is most health information not relevant to us, most of us have other important things to do: go to work, pay bills, make supper. Even when we have a chronic condition, we think about our health only when something goes wrong and then we just want to fix that problem so we can get back to normal.
It can no longer be a hobby of the feisty few to participate actively and knowledgably in their care. It is now necessary for each one of us to do this if we are to benefit from the services and technologies our taxpayer dollars – and our own money – pay for.
I am concerned that most of us don’t understand that our indifference is causing us unnecessary suffering, wasting resources and leading to poor outcomes. I am also acutely aware of the burden that these new responsibilities impose on us, especially on when we are too sick or confused or lacking the resources or education.
What can be done to channel our energy, resilience and self-interest to make certain that everyone can make the best possible use of the services and technologies available?
After interviewing hundreds of seriously ill people, I learned that most people really are willing to participate in their health care if they know what is expected of them, they know what to do, how to do it and why it is important to their health – and if they know they can get help if their efforts fall short.
It’s time for all of us to recognize we are mutually dependent: that I cannot treat my cancer by myself – and neither can my doctor. We now need each other more than ever to bring our respective expertise and commitment to the task. But regardless of our health histories, as patients we are always novice outsiders within health care. And so we will need help – basic information, guidance and a range of support that is specific to our needs – to make it possible for us to fully participate in the effort to live for as well and as long as we can. |
