Trump Bans Science Words, but Efforts to Improve Patient Health Literacy March Forward

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The Trump administration’s directive last week to ban the use of the words “evidence-based” and “science-based” in some federal budget documents was hardly welcome news to health researchers. But Stan Hudson, the associate director of the Center for Health Policy at the University of Missouri, says he is not too worried about the directive’s potential impacts on a growing movement to improve Americans’ ability to find and understand health information, make appropriate decisions based on that information, and carry them out — skills collectively known as health literacy.

Nine out of 10 Americans struggle to use health information that is unfamiliar, complex, or full of jargon, according to the CDC. That could easily be improved, a new report suggests.

Visual: track5/E+ via Getty

For now, the ban seems to pertain only to budget language, Hudson notes. And the affected part of the government, reportedly the Department of Health and Human Services (HHS) and its Centers for Disease Control and Prevention (CDC), released a statement that it will continue to use the “best scientific evidence” available to improve the health of Americans.

“So long as they continue to support the evidence of health literacy to improve the health of Americans,” Hudson says, “it seems like these semantic decisions shouldn’t impact their National Action Plan to Improve Health Literacy.”

That plan, released in 2010 by HHS’s Office of Disease Prevention and Health Promotion, calls for various policies in health, education, and research to help people make informed health decisions and to deliver health services in ways that are understandable and that promote health and well-being.

Health literacy is not high in the U.S. Nine out of 10 Americans struggle to use health information that is unfamiliar, complex, or full of jargon, according to the CDC. More than a third of Americans surveyed in the 2003 National Assessment of Adult Literacy received basic and below-basic scores on health literacy — meaning they could at best read and understand information in short, commonplace prose, and do one-step of arithmetic on easily found health figures, if the math was explained or easy to figure out. Low health literacy is linked to worse health and higher costs, and it is more likely to cause problems for minorities and low-income people, according to the 2010 report.

Anyone who has tried to parse a doctor’s report on blood test results or calculate the out-of-pocket cost of an upcoming procedure knows that these tasks can be as hard as understanding James Joyce. The health care industry in the U.S. is not as transparent as many others, Hudson says.

Patients and families want this to be easier. Most doctors do too. The American Medical Association, CDC, HHS, and other organizations have endorsed health literacy. But high-level administrators at hospitals and medical centers have often been resistant, Hudson says, wondering if investments in health literacy will yield a “return on investment.” They already face budget hits and headaches associated with enforcing the use of electronic medical records and adherence to the Affordable Care Act.

A public service campaign from the U.S. Centers for Disease Control and Prevention extols the virtues of American health literacy. Visual: CDC

With this in mind, the National Academies of Sciences, Engineering, and Medicine commissioned Hudson and his colleagues to make a case for improving health literacy that would get through to chief executive officers and chief financial officers. The team recently presented its report to the National Academies and a final draft is expected early next year.

The analysis, based on relevant published research, surveys from 135 people in the field of health literacy, and some follow-up interviews, finds that low health literacy in the U.S. runs up an estimated $105 billion to $238 billion in costs annually for directly producing health services and products.

Programs aimed at increasing health literacy include automated phone calls to remind people to undergo cancer screenings, diversions to dental clinics for people who go to the emergency room with dental problems, educational videos before colonoscopies, and “What to Do When Your Child Gets Sick” booklets for parents to help them deal with kids’ health problems at home — or at urgent care clinics — rather than at expensive doctor’s offices or hospitals.

Improvements to health literacy not only help patients get healthy, stay healthy, and engage in healthier habits such as taking medication and keeping blood sugar and cholesterol under control, the report states. Such improvements also prevent costly visits to emergency rooms, reduce hospital readmission rates and medication errors, and lead to more satisfied patients, among other benefits.

One caveat, Hudson notes: The long-term effectiveness of health literacy efforts remains unclear, because most studies have only tracked such programs across one or two years. Some administrators and researchers have also chosen not to submit negative findings about the impact of health literacy programs to journals, Hudson says, or they’ve declined to evaluate the effectiveness of the programs at all.

“One thing that emerged from interviews is that there is some fear of people working in health literacy field — if interventions aren’t proven effective, they’ll work themselves out of a job,” he says. “So, they don’t publish.”

A new journal devoted to the issue might well serve as a corrective to that. Health Literacy Research and Practice, likely the only journal devoted entirely to the topic of health literacy, published its first issue this year.

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