AHIP Coverage (November/December 2006)
Health insurers are developing health literacy initiatives and taking steps to help consumers get clear information.
By Aileen Kantor
U.S. education experts are issuing an important warning to their health care colleagues: Few Americans understand their health care information. That’s the conclusion drawn from a National Center for Education Statistics (NCES) survey that assessed the health literacy of 19,000 adults, only to conclude that the nation’s health literacy is dangerously low and may even become a health risk for some. The data, which revealed that fewer than one in six adults and only one in three seniors has proficient health literacy—defined as an ability to understand, read, interpret, and then act on health care information—shed new light on health literacy as a significant operational issue for health care, business, and health plan executives.
Strategically, the data show that despite all communication efforts—from billboards to consumer pamphlets—there remains a big gap between the way the health care industry presents information and the ability of most Americans to understand and then act on that information. This disconnect between what consumers receive and what they can use presents many challenges for health plans and insurers alike, especially in an era where consumers are being asked to play a greater role in managing their health, a necessity given the epidemic of chronic disease that we face.
Because health literacy is a stronger predictor of health status than age, income, employment, education, race, or ethnicity, low health literacy translates into poor health outcomes. For example, according to Pfizer, Inc., patients with low literacy and chronic disease such as diabetes or asthma have less knowledge of their disease and fewer correct self-management skills than health literate patients.
Financially, low health literacy eats up health care dollars, with the annual national cost to the health care system estimated to be $58 billion because patients do not understand what their doctor says or how to take their medications. Furthermore, according to a 2004 Institute of Medicine (IOM) study, Medicaid spent, on average, $10,688 when patients had a below-third-grade reading level, versus $2,891 for those with a better-than-third-grade reading level.
And the list cataloging how health literacy affects patient care and health care outcomes goes on and on. The 2004 National Women’s Health Report found that people with poor health literacy skills are more likely to report poor health status, remain in the hospital more days per admission, need more outpatient visits per year, and have more difficulty using metered inhalers than their peers with average literacy skills.
Overall, the data on health literacy confirm one frustrating trend: Basic English literacy does not guarantee, equate with, or ensure health comprehension or compliance. In other words, even if members can read their health plan information, there is no reason to believe they will understand it, know what to do with it, or even comply with it.
“This news from the National Center for Education Statistics survey supports other data that confirm a very disturbing trend,” says Jann Keenan, founder of the Keenan Group, Inc., an Ellicott City, Maryland-based consulting firm whose primary focus is to help health care providers translate health care information into readable text for consumers. “If you give consumers health information they cannot read, cannot use, or do not understand, there is absolutely no value in even printing the paper,” she says. “Yet to the extent the NCES study puts health literacy on the map and helps to further explain and illustrate the challenge health literacy presents in everyday health outcomes, it is critically important.”
No Quick Fix
The first real step is to enhance awareness about health literacy so plan executives know what they face well before they even consider setting an action plan into motion, explains Sarah Furnas, a health literacy consultant in Philadelphia who specializes in chronic disease prevention and control. “Today’s consumers have a hard time trying to figure out how to manage their various conditions—heart, diabetes, cancer screenings—which is a lot of work. Disease prevention and management now remain in the hands of the consumer and, since most do not have a clear idea of what they are supposed to do, the health care system will be burdened with a mass of chronic diseases that will never be controlled.”
Recognizing the intensity of this daunting challenge, AHIP and its members are working to help consumers better understand health information. In 2005, AHIP endorsed recommendations to improve health literacy as part of its work with the Partnership for Clear Health Communication, a coalition of organizations and individuals that works to promote clearer health communication. Clear health communication principles include writing at a sixth-grade level. AHIP also convened a task force in April to determine how to best advance this goal composed of 40 representatives within 35 companies. After a series of conference calls, the task force developed a three-pronged strategy:
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focusing on health literacy as a major topic at AHIP’s 2006 Communications Conference,
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creating a repository of tools and resources on AHIP’s Web site, and
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creating a permanent infrastructure within AHIP to continue this work.
The plan and messages, government initiatives, and other grassroots efforts are starting to increase awareness and, in turn, spawn new activity. A few health plans have instituted unique programs that show, anecdotally, that when programs are created they can work. While none to date address the mammoth task of completely eradicating low health literacy from all plan operations, many are actively pursuing solutions, including raising awareness about the issue, creating and implementing guidelines, and sending out strong, resounding messages that low health literacy is a serious public health issue. As one way to reduce this growing problem, these programs are, at a minimum, forcing people to focus on clear health communications.
Group Health Cooperative Retools Research
Intuition and frustration led Jessica Ridpath, a research specialist at Group Health Cooperative, Seattle, to question some of the information used in the health plan’s research activities. As a researcher for the Group Health Center for Health Studies, which conducts epidemiological, clinical, and health services research, Ridpath kept tripping over some frequently used language she believed was hard to understand.
“Some of the written information for study participants, especially consent forms, was unwieldy and difficult to read,” Ridpath explains. “At a very basic level, I suspected that many participants did not really understand what the studies entailed.”
In February 2005, she shared her insight with research administrators and was given time, a budget, and permission to explore how the Center for Health Studies could improve written study materials. As a first step she analyzed the consent forms, letters, brochures, and other information usually given to study participants. She learned her suspicions were correct: The Center for Health Studies’ written information averaged at an 11th-grade reading level and exceeded the reading level of most Americans, who, on average, only understand information written at an eighth-grade level.
Group Heath Cooperative then gave Ridpath funding for an additional six months to develop a comprehensive health literacy resource. Her first goal was to create a workshop to educate staff about health literacy and to present strategies on how to develop materials for the average participant’s reading level. The two-part workshop, “Reading Matters: Strategies for Creating Study Materials Participants Really Understand,” included a health literacy primer; guideline training tools to help communicators write materials at an eighth-grade reading level; and examples of more readable text (excerpts from actual consent forms that had been revised). Ridpath also provided editorial services to study teams that wanted help revising their materials.
“The workshop was extremely successful,” says Ridpath. “We strategically worked to harness its enthusiasm and with a team of project managers at the Center for Health Studies, we created a comprehensive readability toolkit. Our goal for the toolkit was to help health researchers understand health literacy and to learn to write information in plain language that study participants can easily understand.”
Fusing existing resources in the health and literacy communities with her own experience and creativity, Ridpath completed the “Center for Health Studies Readability Toolkit” within six months. It contained health literacy guidelines and a checklist for writers; template language for consent forms, which includes easy-to-read chunks of language for common consent topics; suggestions for alternatives to complex words, research terms, and medical jargon; a list of available online resources; and a list of relevant literature.
News of the kit and its availability spread quickly, a surprise to both Ridpath and Group Health. “We believe our toolkit is popular because it is not only an innovative tool, but it appears to be one of the only health literacy tools specifically designed for the research community,” she says. “We continue to get requests from others to post this tool on their Web sites and as one way to further this cause, we are happy to comply.”
Most recently, Ridpath’s toolkit became part of a project funded by the National Institutes of Health’s Roadmap Initiative, which, among other things, works to find ways to more easily translate research findings into medical practice. Here, it is being evaluated as part of the effort to develop best practices in research. And while Ridpath has no data to show the efficacy of her workshop or toolkit, she is confident that the research materials at the Center for Health Studies have improved and that research participants are now more likely to understand the information they receive.
While thrilled with her accomplishments thus far, there is no rest in sight for Ridpath. “In spite of our efforts and success, I think we have only reached the tip of the iceberg in health literacy research. Our future progress depends on educating the health care community about health literacy, making the industry aware of how it impacts medical outcomes, and then achieving complete buy-in from the medical and research communities,” she says. “Once we accomplish these tasks, we may be able to develop an ongoing culture of health literacy. “Until then, there’s a lot of work to do.”
A Multipronged Approach in Rhode Island
The convergence of three powerful forces drove Blue Cross & Blue Shield of Rhode Island (BCBSRI), the state’s largest insurer, to commit to health literacy. The IOM report’s stark findings, a poor state literacy level (almost half of adults are unable to read at a third-grade level), and statistics presented at a conference that emphasized how low health literacy affects medical outcomes all propelled BCBSRI to face this issue head-on.
In July 2005, BCBSRI started the state’s first and only organization for health literacy, the Rhode Island Health Literacy Project (RIHLP). Its core members—Brown University, Quality Partners of Rhode Island, the Hospital Association of Rhode Island, the Rhode Island Medical Society, the Rhode Island Department of Health, the Rhode Island Department of Human Services, the Rhode Island Health Center Association, the Rhode Island State Nurses Association, and others—quickly emerged. RIHLP’s goal is to improve health literacy in the state so all consumers better communicate and understand health information, treatment options, and self-care instructions.
“With health literacy as part of our Quality Management Operations department, we wanted to build a program with both long- and short-term goals, and we needed to find strategies that would not only raise awareness, but create consistent, concrete steps we could all agree on,” says Kate McMahon, health literacy program manager at BCBSRI. “We adopted standards from the Clear Language Group and other resources to develop a set of guidelines, which included rules for text, graphics, and other editorial standards. We developed the guidelines as a group project; everyone had an opportunity to review, collaborate, change, adopt, and deploy them, a process that goes a long way toward creating consistency throughout the community.”
RIHLP also created a “Check-up Checklist,” which offers consumers a list of things to consider when they go to the doctor, such as bringing their medications and paper and pencil, as well as offering patients sample questions to ask about their care. A third project focused on developing a curriculum for health care consumers.
As a first step, RIHLP tested the basic health curriculum at Dorcas Place, an adult and family learning center in Providence. The curriculum was offered as part of English for Speakers of Other Languages and Adult Basic Education classes. It is made up of six units that focus on exercise and nutrition, medication safety, partnering with a primary care physician, going to the hospital, health insurance, and navigating the health care system.
“A key part of the curriculum is to help participants realize that if they understand the health care system and how it works, they might use it more effectively and have better health outcomes,” says McMahon. “Because our state has an enormous problem with emergency room over-utilization, we wanted to teach consumers about the health care system as one way to reduce overuse. If we can encourage consumers who have a sore throat to call or go to their doctor’s office and then help them understand and follow the doctor’s treatment plan, we may be able to eliminate an unnecessary and expensive trip to the emergency room.”
Given the curriculum’s success—determined both anecdotally and through the results of comparing pre- and post-tests—it is now being deployed at other sites; RIHLP planned to take it on the road this fall to hospitals and senior centers. It will also be available for others to use via the group’s Web site (www.rihlp.org), which was scheduled to launch before the end of the year.
In the meantime, RIHLP is finalizing a health literacy toolkit for physicians. It contains information on general health literacy issues, advanced directives and pain management, and cultural competency. The goal is to help physicians explain treatment options and end-of-life care in a way their patients will understand. Consumer materials, written in plain language, are included.
Health literacy is also being strengthened within BCBSRI’s operations. The entire health plan has adopted and is applying health literacy standards, and an internal committee made up of representatives from 15 departments works to identify areas for improvement in both verbal and written communications with members. “BCBSRI is excited by the number and quality of projects we’ve helped implement in just one year and is committed to continuing to lead and support initiatives that will improve the health literacy of our members and all Rhode Islanders in the coming years,” McMahon notes.
Anthem Keeps It Plain and Simple
When the state of Maine launched its new DirigoChoice in 2005, a public-private partnership that offered health coverage for businesses with 50 or fewer employees, the self-employed, and individuals, it meant some creative work for the communication shop at Anthem Blue Cross and Blue Shield, which administered and underwrote the program. Specifically, the marketing communications staff and Program Manager Karen Harrison were asked to quickly develop consumer insurance information at a sixth-grade reading level, materials that were considered health literate. Recognizing the need for specific assistance, Anthem retained the expertise of the Maine Area Health Education Center Network (AHEC) at the University of New England, an independent center with an expertise in health literacy (www.une.edu/com/ahec/default.asp).
The training, originally conceived for copywriters, expanded to include designers and account managers as well. In a customized, intensive one-day seminar, Anthem staff received background on health literacy, including health status and financial implications of low health literacy. Staff learned to assess materials for low literacy and recast copy in plain language for all consumers and were trained on how to use reading formulas. The workshop’s underlying goal was to help employees understand the big difference between the high reading levels among health insurance industry insiders and what most Americans understand, and then how to work toward closing this gap.
“Staff members from every discipline were excited about the training. Now they’re applying health literacy skills to communicate key health and insurance messages to our members in a friendly, simple way,” says Harrison. Anthem continues to fold health literacy principles into member materials, using the AHEC as a resource.
“Not all people with diabetes want to know every last detail about how their blood chemistry affects their health status,” Harrison points out. “But if you tell them in plain language that they need to get their feet checked every time they go to the doctor—and they understand it and act on it—you may save their feet and prevent amputation. Plain language really works.”
Aileen Kantor is the founder of PR Healthcare, Bethesda, Maryland, a PR and communications firm that specializes in health care. This year she is launching Health Literacy Innovations (www.healthliteracyinnovations.com), which has created the nation’s first interactive software tool to help make health care information health literate.
