Health Literacy at the U.S. Department of Health and Human Services: Progress and Possibilities1
The workshop opened with a plenary presentation by Howard Koh, professor of the practice of public health leadership at the Harvard School of Public Health and former Assistant Secretary of HHS. He reviewed the progress that HHS has made in health literacy over the past decade despite what he characterized as the giant obstacles in this arena. “This field is not viewed as glamorous by many,” said Koh. “While it may not necessarily attract headlines, it is absolutely at the core of everything we do as health care and public health professionals.” He noted his friend, the late Reverend William Sloane Coffin, once said, “Giant obstacles are brilliant opportunities, brilliantly disguised as giant obstacles,” which is relevant to what has transpired over the past decade of health literacy work in the United States. He also acknowledged the work of his former colleagues in the HHS Health Literacy Group, specifically Cynthia Baur, Cindy Brach, and Linda Harris.
As the son of Korean immigrant parents and one who wanted to be a physician from a young age, Koh has had a long interest in health literacy. He noted how his family would ask him health questions from the time he was in medical school and later relied on him to help them navigate the health care system. “At a very early age, on a personal level I encountered all of the barriers to good communication and health literacy in the health system,” said Koh. He also commented on the fact that ongoing demo-
1 This section is a summary of the presentation by Howard Koh, professor of the practice of public health leadership at the Harvard School of Public Health and former HHS Assistant Secretary, and the statements are not endorsed or verified by the IOM.
graphic changes project that by 2043 the United States will become a so-called majority/minority nation—one in which a majority of the population will be a member of a racial or ethnic minority. He cited the statement by Reverend Martin Luther King, Jr., that “we may have all come on different ships, but we’re in the same boat now” as to why these demographics are important to the topic of health literacy.
A major gap looms between what providers intend to convey and what patients and families understand, said Koh. “The central question is, what does it take to have the capacity to process and understand health information in order to make appropriate health decisions? That is the heart of health literacy.” He said there are so many dimensions to this question given the many avenues of communication that exist between doctor and patient, including reading ability, verbal language skills, and numeracy. He realized early in his medical career that simply asking patients if they understood his explanations of a cancer diagnosis and possible treatments was the wrong way to approach a doctor/patient encounter.
A better approach, he learned, was to first assess a patient’s understanding of their condition before providing any additional information. Some patients would reply they had read everything conceivable about their cancer, that they knew about all of the treatment options and had decided on the one that was most appropriate for them. Others would say they felt scared and paralyzed by all of that information, and wanted to rely on his advice on which treatment option was best. Then there are the patients who would say they are not physicians, that they did not want to hear any information and they would simply follow whatever course he would lay out for them. “That is a tremendous spectrum,” he said, and over time he came to respect that spectrum of knowledge and understanding and to start the dialogue by understanding where the patient was. “In hindsight, this was my own way of discovering what all now know as the teach-back method,” said Koh. “That method represents the future for health literacy.”
Health literacy took on added importance for Koh when he became Assistant Secretary for HHS in 2009. It was then that he first became aware of the growing body of evidence showing that limited health literacy leads to a cascade of suboptimal outcomes. At that time he came to appreciate that health literacy can be viewed through many lenses, whether it is in terms of specific areas such as understanding prescription drug labels and medication adherence, or broader areas such as disease category, cultural and linguistic barriers, and how health literacy affects children or seniors. One of his suggestions for the future is to take an even broader view and move the health literacy discussion into the community, into public health and population health.
As an example of how health literacy has an impact beyond the clinic, he cited how the nation and the world are struggling with the most recent
outbreak of Ebola. “When we hear the term ‘quarantine,’ what does that mean to you? Does it mean confinement in a hospital or in a tent on hospital grounds, as happened to the nurse in New Jersey? Does it mean confinement at home? Does it mean you have limited movements, but you can move around with freedom as long as you do not mingle with large crowds in public?” asked Koh. How someone interprets the word quarantine can influence how they protect their own health and the health of their families, he explained.
Over the past decade, Koh said he believes there have been at least two major paradigm shifts in the field. The first shift has been to view health literacy not simply as a problem for individuals, but rather as a systems issue. “If we are going to make further progress on health literacy, we must embrace the concept of organizational responsibility for health literacy,” said Koh. “In addition to training individuals and providers, for example, we need to get organizational heads to underscore the importance of health-literate organizations.” It will be critical to promote systems change for all health care organizations. The second paradigm shift, which has been called universal precautions, has been to stop assuming that people understand health information but instead assume that people are at risk for not understanding unless proven otherwise. In this time of health reform, insurance terms like “medical loss ratio” can lead to confusion for almost all Americans.
To make progress going forward, he said, we can engage as many partners as possible in this conversation, including non-traditional partners, and integrate the health literacy theme into all health care and public health discussions. “That way, health literacy comes alive and we gain more supporters for this very important cause,” said Koh. Today, for example, leaders from hospitals and health organizations, as well as from government, academia, foundations, and patient and consumer groups, have joined this conversation. More needs to be done, however, to involve leaders of health plans and public insurance programs, as well as those of accrediting bodies, and to reach out beyond the health care sector into fields such as adult education and child care.
Health literacy has long been of interest at HHS, said Koh, as witnessed by its inclusion in the Healthy People 2010 report, which was released in 1999, as an important goal for the nation. The most recent Healthy People 2020 report includes a number of goals and objectives related to health literacy, particularly regarding metrics for assessing how many providers make their instructions to patients easy to understand, how many are using the teach-back method, and how many are involved in the commitment to shared decision making with their patients. He noted that HHS has worked closely with the U.S. Department of Education (DOE). A key national assessment of adult literacy conducted in 2006 showed that 36 percent of U.S. adults had basic or below basic health literacy.
Other HHS activities of note include AHRQ’s annual research conference on health literacy and its inclusion of health literacy questions in the Consumer Assessment of Healthcare Providers Surveys; the use of health literacy principles to create the health and prevention information available on the HHS website http://www.healthfinder.gov; and the 2010 release of a national strategy for health literacy (HHS ODPHP, 2010), which Koh said is still the only publicly available strategic document on health literacy goals and strategies. Among the seven goals listed in the strategic plan are those that link health literacy with child care, English-language instruction activities, and adult education, all of which reach out beyond the health sector and take a social determinants approach to health. The plan explicitly addresses the need for culturally and linguistically appropriate services, and Koh noted that the HHS Office of Minority Health has for the past 13 years put forward what is known as the CLAS Standard, a set of culturally and linguistically appropriate services standards. These standards are aimed at getting organizations to take a systems approach to thinking about reducing health disparities and increasing health equity (Koh et al., 2014).
In 2010, AHRQ released the Universal Precautions Toolkit (DeWalt et al., 2010), building on the paradigm change of assuming that people are at risk for not understanding health information unless proven otherwise. The Toolkit contains 20 specific steps for implementing universal precautions across a health care system and includes concrete suggestions such as focusing on teach-back and ensuring a brown-bag medication review for patients so they understand what prescription drugs they are taking and how to take it. Koh noted that the Toolkit’s emphasis of creating health-literate organizations owes much to the pioneering work of the IOM and the Roundtable.
Another accomplishment that Koh noted is the Plain Writing Act of 2010 that President Obama announced. “I remember that each agency was asked to appoint a lead person to assure that federal documents were written more understandably,” said Koh. He added that at HHS, the Executive Secretary, the person responsible for all of the department’s written correspondence, was put in charge of that effort. Koh also noted a 2012 paper published in the journal Health Affairs that highlighted the role that federal policies can play in boosting health literacy and reducing the cost of health care (Koh et al., 2012).
With regard to the transformative ACA, Koh said it is unclear how much the public understands the opportunities that the Act affords them to get insurance coverage and how well people understand basic insurance terms such as “deductible” and “copay.” He noted that the Centers for Medicare & Medicaid Services (CMS) launched an outreach effort in the summer of 2014 to inform the 10 million newly insured Americans about the dimensions of their new coverage and how having insurance can benefit their health. CMS has developed easy-to-understand pictures and graphs
to better explain insurance coverage benefits. He also commented on the results of polls conducted by organizations such as the Kaiser Family Foundation showing the overwhelming popularity of section 2715 of the ACA, which calls for standard definitions and uniform explanations of coverage benefits for all plans.
One tremendous opportunity for improving health literacy is in the ACA’s focus on improving quality through new models of care and prevention, such as accountable care organizations (ACOs) and patient-centered medical homes. An initiative called the Community-Based Care Transitions links patients being discharged from the hospital to providers in the community to reduce the chances of being readmitted to the hospital. Koh also mentioned the opportunity for cost savings and quality improvement through bundled payments and through better management and coordination of care for patients who are eligible for both Medicare and Medicaid. CMS’s innovation grants foster new ways for teams to test new strategies to improve care quality and lower costs. “Health literacy should be a major theme in all of these efforts,” said Koh. Not paying attention to health literacy wastes money and leads to adverse outcomes and lives lost. With that in mind, the health literacy community should promote efforts to build a strong business case for the field that will capture the attention of policy makers, Koh said.
As a final note, Koh described the cycle of crisis care that can result when health literacy is ignored. In a typical scenario, Mrs. Jones is without insurance and on a fixed income, and she suffers from diabetes and heart failure. She arrives a half-hour late for her appointment because the hospital signage confused her. Her confusion increases when she cannot understand the pile of forms the receptionist hands her. It rises even further in the examination room when she cannot understand the medical jargon that her provider uses. At that point, she is too overwhelmed to ask any questions and the doctor leaves her with a handful of prescriptions that she does not understand and referrals for laboratory work that she cannot quite comprehend. Not surprisingly, she fails to obtain the laboratory tests and some of her prescriptions go unfilled. Eventually, she ends up being hospitalized, treated, and discharged, again with little understanding of what she is supposed to do to best care for herself.
“We have all been through this as doctors, as patients, and as public health professionals,” said Koh. “We have to move toward a system that is better in supporting the patient every step of the way.” One way to do so is to follow what Koh and his former colleagues at HHS called the Health Literate Care Model based on the Care Model pioneered by Edward Wagner. This model provides a means for changing systems to provide improved care for patients. It argues for looking at ways of connecting decision support and clinical information systems to the community.
The Health Literate Care Model that the HHS team proposed calls for leveraging systems change to create health-literate care organizations. In this updated scenario Mrs. Jones would receive a call prior to her appointment telling to bring all of her medications to her appointment. A health-literate organization would provide her with forms that she can understand and help her fill them out if she has questions. A medical assistant would review medications with her and make sure she truly understands how to take them. Her physician would present treatment options in a way that would enable the two of them to create a care plan that Mrs. Jones could explain in her own words. When she got home, she would be connected to a diabetes peer support group near her home that would help her practice prevention. “That is the vision for the future,” said Koh. “If we can do that for all patients, all consumers in health care and in public health, and if we can build these better systems and make the best business case possible with the best data we have, then we can certainly make much more progress for health literacy in the future,” said Koh in closing.
During the brief discussion period following Koh’s presentation, Lindsey Robinson, a practicing dentist and trustee for the American Dental Association, asked Koh how oral health fits into the discussion within the federal government, both about health literacy but also as part of the bigger issues of health care reform. Koh replied that traditionally, oral health was seen as something separate from the rest of health care and public health, but that attitude is changing. Today, he said, HHS has an oral health working group that spans the entire department, just as is seen with health literacy. He also noted the coordination that is occurring nationwide thanks to the work of the National Oral Health Alliance, of which Robinson happens to be a board member. As one example of the concrete progress that has been made at integrating oral health into the bigger scope of health care, Koh cited the community health centers. “Well over 50 percent of them are now providing oral health services on site,” said Koh.