Jessie C. Gruman, PhD is president and founder of the non-profit organization Center for Advancing Health. Her experiences as a patient — having been diagnosed with five life threatening illnesses — informs her perspective as an author, advocate, and lead contributor to the Prepared Patient Forum blog. Her most recent book, AfterShock, helps patients navigate their way through the health care system following a serious or life-threatening diagnosis. You can follow her on Twitter at @JessieGruman. More…
I was listening to the piano tuner plunk away on my piano last week and I thought about just how many things I can’t do for myself. Or maybe I could do if I devoted time to learning. Economists call this “rational ignorance.” It means inattention when the costs of paying attention outweigh the benefits. My rational ignorance extends to car repairs, manipulating mutual funds and the rules of the Electoral College. To me, each of these represents skills I will rarely use.
Lately we have seen challenges to some popular zones of rational ignorance…consider home mortgages, retirement planning, stock investments. Many of us used to think it was possible to manage these with minimum effort and expertise, but recent events have jolted us into a different mindset.
Many of us maintain a similar rational ignorance about our health and health care: “If I get sick, I’ll go to the doctor and she will fix it. In the meantime, I have a job/kids/school/Facebook to attend to.” But health care is changing rapidly and it is clear that this approach is not as benign as it once was.
We must make choices about whether to get procedures, take drugs or undergo surgeries, but their risks are often found only in the fine print or in rushed informed consent discussions as we are prepped for the operating room. We find ourselves selecting health plans and doctors, making decisions about care coordination and treatments, and delivering complicated care at home. Our “skin is in the game” whether we like it or not, whether we know it or not, whether our insurance covers part, all or none of our health care.
You may not have had some of these experiences. After all, most of us are mostly healthy most of the time and have little reason to come up against the sharp edges of insurance constraints, limited time with clinicians, and the demands of complicated medication, diet and physical therapy protocols. But every day, many of us find ourselves investing more time and energy learning about and coordinating our care and that of our families. More of us will feel the weight of our growing responsibilities as health care policies and practices are modified to lower costs. We are all going to have to become tougher and smarter, even when we are sick — if we are going to benefit from the health care available to us.
What is it that we really need to know to do this successfully?
Last Sunday in the New York Times, Larry Summers, former President of Harvard/Treasury Secretary asked, “What does an educated person really need to know?” And he offered five prescriptions for how higher education must change to prepare graduates to meet today’s challenges.
It seems to me that Summers’ ideas about what educated people need to know bears a remarkable resemblance to what all of us – not just our doctors and people with college degrees – really need to know and do in order to stay healthy and benefit from health care.
Summers talks about how new information and communication technologies mean education will become more about how to find and use information; factual mastery will become less important. For patients, finding the right information at the right time increasingly means searching online. Collections of health information exist, though their depth and quality vary widely, as does the reading level and degree of scientific sophistication required to understand them. Some streamlined approaches to using them have been introduced to shortcut the public’s deficits in search skills. But while we may know how to conduct a search or click a button, we rarely know how to apply what we find to our situation.
Summers adds that more tasks will be carried out collaboratively. He describes how advances in science mean that researchers from multiple disciplines must work together to answer complex questions. We have a tradition of consulting individual physicians, each of whom attends to a specific body part or organ system. We are not used to communicating with a team of professionals – physicians, nurses, physical therapists, social workers. And many of us are reluctant or unable to become part of that team, to recognize the expertise of non-physicians and commit to acting on treatment plans we develop together. As team-based care becomes a reality, we and our clinicians will need to embrace the fact that we are engaged together in a shared project to return us to — or maintain — our health. None of us can do this alone.
“Technologies will profoundly alter the way knowledge is conveyed.” Whew. No more pamphlets. Increased responsibility means that we not only must become knowledgeable about our conditions but we will also need to learn to use different tools: the blood pressure cuff, the insulin pump, the home dialysis machine, the infusion equipment. And our interactions about health care will require us to use digital approaches to monitoring and communicating with our clinicians: logging into a patient portal, entering blood pressure or weight data, making sense of a trend line in a chart, scheduling tests and conversing with clinicians by e-mail.
Summers notes that higher education must place a greater emphasis on the analysis of data: “It is not possible to make judgments about one’s own medical care without some understanding of probability.” Without an appreciation of probability, we are unable to make informed decisions: we can’t understand what our risks are or their magnitude or what the chances are that a treatment will help or hurt us. Without some grasp of probability, the provisional nature of science and uncertainty of disease progression appear as merely products of luck: why should I bother to learn, to engage, to participate in reducing those risks?
Finally, Summers notes that people learn in very different ways. Some of us will acquire the skills described above while sitting in a community center on Wednesdays after work. Some of us will still learn what we need to know from a textbook or from brief visits with our primary care clinician. We will all need to piece together a personal patchwork of digital, print and in-person approaches to acquire confidence and competence.
Some people who have felt the chaos and gaps of health care (often people with serious complex chronic conditions) are on top of this. Smart, generous and committed, they come together online to share strategies and provide support. They scrounge for evidence, scrutinize it publicly and work with any willing collaborator. Some clinicians are addressing the risk-shifting and patient burden for care by using decision support tools, group visits, case managers, regular phone contacts and secure e-mail to help people learn to care for themselves.
Such efforts demonstrate the growing recognition by patients and those who care for them of the new reality of health care in the U.S. And regardless of our wishes and efforts toward patient-centeredness, future health care won’t look anything like the idealized “average” of the past: the simple treatments, the beloved family doc, the protective back-up of a familiar community hospital.
Larry Summers describes what he thinks educated people really need to know. But I think he’s talking about what every person really needs to know. Take a moment and think about each of the skills described above. Imagine what your experience of health care would be like if you didn’t know, for example, how to find information about a symptom or a treatment; you didn’t understand team care; you couldn’t figure out how to turn on your wife’s oxygen; you don’t understand why you should take those pills as directed.
Many people do not now possess these skills. Each of us eventually must. Not just the educated among us. All of us.
Related links:
Douglas Kamerow, MD, MPH, is a family physician, a former Assistant Surgeon General and the author of “Dissecting American Health Care.” He works as chief scientist for Health Services and Policy Research at the research institute RTI International and as a Professor of Clinical Family Medicine at Georgetown University. Dr. Kamerow is also an associate editor of the global medical journal BMJ, for which he writes a regular column on health policy, and he is a frequent health commentator on NPR’s All Things Considered. He is the former chair of CFAH’s Board of Trustees.
Inside Health Care posts feature recent news and blog posts from the health care community and are part of the 
Kenny Lin, M.D., is a board-certified Family Physician practicing in the Washington, DC area. He is also an Associate Editor of the journal American Family Physician and teaches family and preventive medicine at the Georgetown University School of Medicine, Uniformed Services University of the Health Sciences, and the Johns Hopkins University Bloomberg School of Public Health. He blogs on 
Aftershock:
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