Over the past several months, I have watched the health reform debate descend into confusion, miscommunication and dysfunction—often the very words patients use to describe the health care system itself. This relationship is often fueled by low health literacy and a failure of the health system, health providers and insurers to effectively communicate with patients. I am convinced that low health literacy is now systemic and has morphed into low health reformliteracy. It has spread out from the nation’s patient-provider encounters to this summer’s town hall meetings, all the way to the floors of Congress and the White House. At nearly all levels of interaction, low health literacy is pervasive and so is low health reform literacy.
What exactly is health literacy? It is the ability to read, understand, internalize and act on health information in one’s own best interest. Low health literacy impairs a patient’s ability to follow a doctor’s instructions, manage a chronic illness and adhere to medication as directed. According to the 2003 National Assessment of Adult Literacy (NAAL), almost 45 percent of the United States population—93 million Americans—have only basic or below basic literacy skills. “Below basic” is defined as the ability to perform only the simplest acts of literacy—signing a form, adding amounts on a bank deposit slip or searching a simple text for instructions. “Basic” is categorized as the ability to perform everyday activities like using a TV guide, comparing ticket prices for two events or reading and understanding the information in a pamphlet.
Patients with low health literacy are hospitalized for two days longer on average, their HgA1Cs (the measure used to gauge adequate diabetes control in a patient) are higher, their blood pressures are more often poorly managed and most importantly, they lack the skills needed to navigate a health care system in which the majority of information is written at a 12th grade reading level. Low health literacy pervades all race, education and class lines and adds tens of billions of dollars each year to health care costs.
This now applies to the health reform discussion. A lack of understanding and clear communication of basic issues—metastasized by politics, special interests, the 24-hour news cycle and genuine fear and pain—has fueled illogical and at times irrational behavior. Citizens take to the streets to question or confront political representatives, many fighting for or against things they can’t even define. What is a mandate? What is a public option—and how is it different from single-payer, or health co-ops? How does the system we have in the United States compare with Canada, much less Switzerland, the UK or Australia? To complicate matters even more, the majority of Americans are getting their information from increasingly sensational television coverage, opinion-driven talk radio and neighbors and colleagues who don’t understand the reform options either. Low health reformliteracy is threatening to derail the much-needed overhaul of a health care system that leaves millions of Americans with no health coverage, at risk of bankruptcy and economic ruin, and millions more feeling dissatisfied with the coverage they have and are terrified to lose, no matter how poorly it works for them.
But just as low health literacy is not the sole responsibility of the patient, blame for low health reform literacy cannot be laid solely at the feet of a frustrated public. Congressional and White House leaders, like many health professionals, have done a poor job explaining what the problem is, what we need to do and why. Bitterly divided along partisan lines, our political representatives are intensifying low health reform literacy. They have allowed the very real and very necessary conversation about health reform in America to get obliterated by culture war issues and political grandstanding.
There is a “rule of three” in health literacy circles. A focus on three messages, clearly articulated in a culturally and linguistically sensitive way, has proven effective at fostering an understanding of complex health information and ensuring action. As a physician, I have seen this simple strategy do wonders to raise health literacy on the patient level. I believe it can also be applied to the health reform debate to get it back on track.
By encouraging patients to diligently ask the following three questions, I have seen dramatic improvements in the way they manage their own care: What is the main problem? What do I need to do? Why should I do it? Imagine if we asked these three basic questions about health reform at the town halls, congressional debates and press conferences that are devoted to this topic.
What is the problem we are trying to solve? Lack of access to affordable insurance, high insurance premiums with substandard coverage, runaway costs and cost ineffectiveness? What are the solutions? State-based insurance purchasing pools, a government-run single-payer system, national regulatory standards for state-administered insurance? Why is this important? Here there is no question: millions of uninsured and underinsured Americans, skyrocketing co-pays and deductibles, lack of portability, pre-existing conditions and an erosion of trust in a confusing system that’s not really a system at all.
It’s time to move past the summer’s angry confusion. Let’s work to improve our health reform literacy and apply the “rule of three” to the health reform conversation. If we can get back to basics, it really will be about health reform, and it really will be a conversation.