In another effort to approach health literacy issues at an overarching level, Dean Schillinger recently co-wrote a paper for the Institute of Medicine entitled “Ten Attributes of Health Literate Health Care Organizations.” He and several other authors identified steps that they believe could improve health literacy. Among them are organizational leadership that “makes literacy integral to [an institution’s] mission, structure and operations” and creating a system of care that “meets the needs of populations with a range of health literacy skills while avoiding stigmatization.” Also important, according to the IOM paper, is communicating clearly to patients “what health plans cover and what individuals will have to pay for services.” At this point, Schillinger says, “we’re far away from doing any of those things. But if we can fix the communication problems in health care, we won’t solve everything, but we will make a dent.”
An earlier IOM paper, in 2004, called for a concerted effort to publicize and address the issues of health literacy, and in 2010, the U.S. Department of Health and Human Services issued an action plan that ranges from improving health and science curricula in schools to encouraging changes in the health care system to promote informed decision making. Yet such efforts come at a time when patients are being asked to take more and more responsibility for the details of their medical care—and when, as part of a shift toward shared decision making, many patients indeed want to help direct their own care in a much more active way. Adequate health literacy is a prerequisite for that larger role, and physicians who attempt to help patients weigh the pros and cons of treatment options may find their efforts hindered by patients’ inability to understand complex trade-offs.
In other cases, patients don’t seem interested in learning more or in taking responsibility for helping make decisions about their care, preferring just to go along with their doctor’s recommendations. “There could be a whole host of reasons why people are not engaged in their care decisions, such as challenges in navigating the health care system, a perceived lack of empowerment, or personal reasons,” says Sarah Collins, a nurse informatician at Partners HealthCare in Boston. “But if we can determine that a lack of literacy is why they don’t want to engage, we could intervene.”
Such interventions take time, and considering how little of that precious commodity doctors tend to have with patients, addressing health literacy issues may seem like just one more demand on an already overburdened provider community. Yet Schillinger contends that much of what’s needed is something caregivers can learn to provide almost without thinking about it. “When I try to teach my teenager American history, he doesn’t want to hear it,” he says. “But if I engage him in a discussion about what’s important to him, I might be more effective. We just need to do some creative pedagogy, to actually have a conversation. I take care of the sickest, most socially vulnerable patients who don’t speak English, have alternative health beliefs and have low health literacy. Yet only a handful defer decision making to me. I have never met a person who does not want to learn about her own body. You need to make sure that you’ve given the person the opportunity to engage.”