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2 Health Literacy and Health Care Reform Prior to the workshop, panelists were provided with a commissioned paper prepared by the Center for Health Care Strategies, reviewing the provisions of the ACA as they relate to health literacy.1 To set the stage for the panel discussions the authors of the paper, Health Literacy Implica- tions of the Affordable Care Act, provided a brief overview of their findings. Following this introduction, a representative of the U.S. Department of Health and Human Services (HHS) offered the Department’s perspective on the commissioned paper and discussed why 2010 was a pivotal year for national action on health literacy. HEALTH LITERACY AND THE AFFORDABLE CARE ACT Stephen Somers, Ph.D., and Roopa Mahadevan, M.A. Center for Health Care Strategies The ACA is landmark legislation designed to increase access to health care coverage for millions of Americans. While it is not health literacy legislation, the goals of the ACA cannot be achieved without addressing health literacy issues. As Somers explained, the legislation offers few potent levers for health literacy; there is no forceful legislative language, no regulatory mandates, and no designated resources for action in this area. The ACA does, however, include several direct mentions of health 1 The complete commissioned paper is provided in Appendix C. 5

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6 HEALTH LITERACY IMPLICATIONS FOR HEALTH CARE REFORM literacy, and multiple indirect provisions where health literacy could be included in broader efforts such as expanding coverage, patient-centered care, or improving quality. Direct Mentions Title V, Subtitle A of the ACA defines health literacy for the purposes of the legislation as “the degree to which an individual has the capacity to obtain, communicate, process, and understand health information and services in order to make appropriate health decisions.”2 In addition, four provisions in the ACA include direct mention of the term “health literacy”: • ec. 3501: Health Care Delivery System Research; Quality Improve- S ment Technical Assistance; • ec. 3506: Program to Facilitate Shared Decision-making; S • ec. 3507: Presentation of Prescription Drug Benefit and Risk Infor- S mation; and • ec. 5301: Training in Family Medicine, General Internal Medicine, S General Pediatrics, and Physician Assistantship. Indirect Provisions Indirect provisions for health literacy fall into six major health and health care domains: • overage expansion: Enrolling, reaching out to, and delivering C care to health insurance coverage expansion populations in 2014 and beyond; • quity: Assuring equity in health and health care for all communi- E ties and populations; • orkforce: Training providers on cultural competency and diver- W sifying the health care provider workforce; • atient information: At appropriate reading levels in print and P electronic media; • Public health and wellness; and • uality improvement: Innovation to create more effective and Q efficient models of care, particularly for individuals with chronic illnesses requiring extensive self-management. 2 Patient Protection and Affordable Care Act, Public Law 148, 111th Cong., 2nd sess. (March 23, 2010).

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7 HEALTH LITERACY AND HEALTH CARE REFORM Coverage Expansion Insurance reforms in the ACA will improve access to coverage for 32 million Americans through the individual insurance mandate, employer mandates, regional and state exchanges, and expansion of Medicaid eligi- bility. The legislation provides for creation of an informational consumer internet portal and funding for local outreach and enrollment assistance programs. However the ability of people to benefit from these reforms is highly dependent upon the degree to which the information is presented in ways that they can understand and use it, and there are provisions in the legislation that underscore the importance of this. As of 2014, Medicaid will cover everyone under the age of 65 who is at or under 133 percent of the federal poverty level—potentially more than 80 million Americans, or one-quarter of the U.S. population. Again, the degree to which these eligible beneficiaries enroll is largely depen - dent on the degree to which they understand the opportunities that are being presented to them. Many of the characteristics often associated with poverty (e.g., limited education, mental health and substance abuse issues) suggest that health literacy is likely to be a significant issue for this population. While state Medicaid agencies have consumer assistance and readability standards, there are no state or federal entities tasked with monitoring or enforcing any readability standards across the healthcare system. Equity There are a variety of instances in the legislation that refer to “cul - turally and linguistically appropriate” communications as a means to help address racial and ethnic disparities. There are also provisions that support the needs of specific disadvantaged populations (e.g., residents of nursing facilities, and rural and tribal populations). While these provi - sions make no explicit link to health literacy, they provide opportunities to incorporate health literacy into implementation efforts. Workforce As the U.S. population grows ever more diverse, workforce devel- opment becomes increasingly more important. The ACA has provisions addressing continuing medical education support for providers to minor- ity, rural, and/or underserved populations and areas; cultural compe- tency and disabilities training curricula in medical and health professions schools; and diversifying the professional and paraprofessional health care workforce. “Cultural and linguistic appropriateness” is a frequent condition of eligibility for the workforce grant opportunities.

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8 HEALTH LITERACY IMPLICATIONS FOR HEALTH CARE REFORM Patient Information Health information and how that information is delivered to consum- ers are other areas where there are opportunities to incorporate health literacy efforts into ACA implementation. Provisions cover, for example, nutrition labeling of standard menu items at chain restaurants, improved presentation of prescription label information, medication management services in the treatment of chronic conditions, enhanced information around choice of plan eligibility and prescription drug reimbursement for Part D Medicare seniors, and the use of health information technology to disseminate information. Public Health and Wellness Public health is heavily reliant on the ability to get information out to the population as a whole, and for the population to understand it, Somers said. There are a number of prevention and wellness provisions throughout the ACA that offer opportunities for health literacy interven- tions, such as increased coverage of clinical preventive services under Medicare, Medicaid, and private health insurance; personalized wellness programs by employers and insurers; and expanded federal grants for chronic disease prevention and other public health issues. Quality Improvement Finally, some of the provisions that address quality, delivery systems, and cost of care provide opportunities to address health literacy (e.g., the provisions that address patient-centered care models [“medical home”] and care coordination). Also, the Center for Medicare and Medicaid Inno - vation will be conducting demonstration programs to research, test, and expand innovations in payment and delivery systems. There is an oppor- tunity, Somers said, for health systems to demonstrate that interventions to address health literacy can pay off, both in higher quality care and reduced costs for the system. In summary, Somers said that the ACA recognizes that patients need to better understand the health information they are being given in order to enroll in the available programs, stay well, and prevent and manage disease. Throughout the legislation there are opportunities for action on health literacy, including targeting interventions to those with low literacy to achieve improved health and reduced preventable hospitalizations.

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9 HEALTH LITERACY AND HEALTH CARE REFORM 2010—THE YEAR OF HEALTH LITERACY Anand Parekh, M.D., M.P.H. U.S. Department of Health and Human Services Deputy Assistant Secretary for Health, Anand Parekh, began by describing four major health policy initiatives released in 2010 that he said reflect a collective recognition that improving health literacy is essen- tial to improving health and health care: the ACA; the National Action Plan to Improve Health Literacy (HHS, 2010); the Plain Writing Act of 2010;3,4 and the launch of Healthy People 2020 (see Box 2-1). Together, these initiatives place health literacy at the center of the national health policy conversation, Parekh said. As a result, more Americans will have meaningful access to coverage and healthcare services; use preventive and emergency and hospital services appropriately; manage their chronic conditions successfully; be more accurately diagnosed; and be healthier. Parekh emphasized that HHS is committed to making health infor- mation accessible, understandable and actionable, and to partnering with others to realize this objective. Agencies across the department are work - ing to implement and operationalize the elements in the ACA and the National Action Plan. HHS ACA Activities While low health literacy is found across all demographic groups, it disproportionately affects certain populations, including non-white racial and ethnic groups, the elderly, individuals with lower socioeconomic status and education, people with physical and mental disabilities, those with low English proficiency, and also non-native English speakers (IOM, 2004). These people are among the estimated 32 million Americans who will be newly eligible for health insurance coverage under the ACA. How we communicate with these Americans will determine whether they understand and use health care services appropriately. Passage of the ACA is just the first step toward expanded coverage, Parekh said. We now need to be accountable for clear and actionable communication with these, our most vulnerable citizens. There are many areas where HHS can and will work toward imple- menting the health literacy activities mentioned in the ACA. Parekh focused his remarks on the four areas where health literacy activities are directly referenced in the ACA: quality research dissemination, shared 3 A video clip from ABC News covering the passage of the Plain Writing Act of 2010 was shown to workshop participants. 4 Plain Writing Act of 2010, Public Law 274, 111th Cong., 2nd sess. (October 13, 2010).

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10 HEALTH LITERACY IMPLICATIONS FOR HEALTH CARE REFORM BOX 2-1 Major Health Policy Initiatives Released in 2010 The Affordable Care Act (ACA) • igned into law in March 2010 S • ealth literacy provisions are on the critical path to achieving the goals of H the ACA; health care cannot be reformed in any meaningful way without health literate patients The National Action Plan to Improve Health Literacy • Launched by HHS Secretary Sebelius in May 2010 • Includes seven key goals to improve health literacy in the United States Most relevant to the roundtable discussions: o eveloping and disseminating health and safety information that is ac- D curate, accessible, and actionable (Goal 1) o romoting changes in the health care delivery system that improve P health information, communication, informed decision making, and ac- cess to health services (Goal 2) The Plain Writing Act of 2010 • igned by President Obama, October 2010 S • o improve the effectiveness and accountability of federal agencies to the T public by promoting clear government communication that the public can understand and use • ssentially a mandate for the federal government to implement important E components of Goal 1 of the National Action Plan (above) • equires each Agency to: R o se plain writing in every covered document of the Agency that the U Agency issues or substantially revises; o esignate one or more senior officials to oversee the implementation of D the Act; o rain employees in plain writing; and T o stablish a process for overseeing the ongoing compliance of these E requirements Healthy People 2020a • aunch planned for December 2010 L • ealth literacy improvement will be measured in terms of how many health H care providers make their instructions to patients easy to understand (through, for example, communication skills, shared decision making, per- sonalized health information resources, easy-to-use websites) • ealthy People 2020 objectives lend public health policy support to the H ACA, the National Action Plan, and the Plain Writing Act of 2010 a Healthy People 2020 was launched in December 2010.

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11 HEALTH LITERACY AND HEALTH CARE REFORM decision-making, medication labeling, and workforce development. These are areas where HHS agencies have already laid important groundwork in health literacy improvement, he said. Quality Research Dissemination Section 3501 of the ACA requires that research of the Agency for Healthcare Research and Quality (AHRQ) Center for Quality Improve- ment and Patient Safety be “made available to the public through mul- tiple media and appropriate formats to reflect the varying needs of health care providers and consumers and diverse levels of health literacy.” 5 AHRQ is already translating systems research findings for consum- ers and providers in multiple formats, from podcasts and social media to interactive tools online, and developing easy-to-use guides on compara - tive effectiveness findings. Shared Decision-Making Section 3506 of the ACA requires HHS to “facilitate collaborative pro - cesses between patients, caregivers, authorized representatives, and clini- cians that enables decision-making, provides information about tradeoffs among treatment options, and facilitates the incorporation of patient pref- erences and values into the medical plan.” The ACA further authorizes a “program to update patient decision aids to assist health care providers and patients. Decision aids must reflect diverse levels of health literacy.”6 AHRQ and the HHS Office of Disease Prevention and Health Promo- tion have collaborated to develop personalized decision support for clinical preventive services. The decision aid, MyHealthFinder7 (healthfinder.gov), was designed using health literacy principles after conducting research with over 700 users, many of whom struggle with health information. At MyHealthFinder, a consumer enters his or her age, sex, and several other additional inputs, and receives tailored information based on his or her individual characteristics regarding which preventive services he or she needs. The Centers for Medicare and Medicaid Services (CMS) is also designing language to help consumers compare plans more easily and make more informed health plan decisions. 5 Patient Protection and Affordable Care Act, Public Law 148, 111th Cong., 2nd sess. (March 23, 2010). 6 Ibid. 7 http://www.healthfinder.gov/ (accessed February 24, 2011).

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12 HEALTH LITERACY IMPLICATIONS FOR HEALTH CARE REFORM Medication Labeling Section 3507 directs the Secretary to determine, in consultation with experts in health literacy, whether standardizing prescription drug labels and print advertising would improve decision making. The U.S. Food and Drug Administration (FDA) has taken the lead in assembling a working group focused on addressing the prescription drug information provi- sions in the ACA and will be reporting to Congress. The AHRQ Center for Education and Research on Therapeutics is already providing easy-to-use information to consumers on the uses and risks of new drugs and drug combinations. Workforce Development Section 5301 of the ACA permits the Secretary to make training grants in the primary care medical specialties, with preference for applicants that “provide training in enhanced communication with patients and in cultural competence and health literacy.”8 HHS has already developed professional training in health literacy that informs the workforce development provisions in the ACA. The Health Resources and Services Administration (HRSA), in collabora- tion with the HHS Office of Minority Health and others, has formed a workforce workgroup to address approximately 20 cultural and lin - guistic competency components of the ACA, including health literacy. AHRQ has developed a Health Literacy Universal Precautions Toolkit 9 that provides guidance on how to improve written and spoken patient communication. AHRQ also has a health literacy training program for pharmacists, and HRSA and the Centers for Disease Control and Preven- tion (CDC) offer professional training in health literacy. CMS is conduct - ing research on beneficiary-provider communications designed to help promote more effective communication and health messages by provid - ers, and the HHS Office of Disease Prevention and Health Promotion is offering a number of health literacy webinars and Twitter chat sessions for health professionals. Additional Health Literacy Opportunities at HHS In addition to the four areas that are directly highlighted in the ACA, additional activities and opportunities are currently under way at HHS. 8 Patient Protection and Affordable Care Act, Public Law 148, 111th Cong., 2nd sess. (March 23, 2010). 9 http://www.ahrq.gov/qual/literacy/ (accessed February 24, 2011).

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13 HEALTH LITERACY AND HEALTH CARE REFORM The Office of Minority Health, for example, is preparing to launch the National Partnership for Action to End Health Disparities, and one of the overarching themes is the promotion of culturally competent interven - tions, including health messages that are health literacy appropriate. As another example, CMS has developed a discharge planning checklist for patients and their caregivers to use to keep track of important informa - tion when preparing to leave the hospital, such as warning signs and symptoms, follow-up appointments, and medication reconciliation. This empowers individuals to improve their personal health outcomes, and reduces preventable hospital readmissions. CMS also is developing a standardized form for collecting concerns from beneficiaries about the quality of care they received from Medicare providers. And across all HHS agencies, communication products are being test-marketed with people with limited health literacy before they are disseminated. Priorities and Collaboration There is a strong foundation of health literacy improvement activi - ties and expertise at HHS, Parekh said. The ACA, the National Action Plan, the Plain Writing Act, and Healthy People 2020 all offer important guidance and tools for leveraging these existing resources at HHS. One of the most important resources is the HHS-wide interagency working group on health literacy, which includes representatives from the Office of the Director of each of the HHS agencies. This working group was the force behind the Surgeon General’s workshop on health literacy, town hall meetings on health literacy across the country, and the development of the National Action Plan for Improving Health Literacy. This group is now poised to help HHS prioritize the existing health literacy activities across the agencies, and spur collaborations. Parekh said that the Assistant Secretary for Public Health, Howard Koh, is firmly committed to ensuring that ACA health literacy activi- ties are implemented for as many Americans as possible. Dr. Koh has asked the HHS Working Group on Health Literacy to become engaged with those in the public and private sectors involved in implementing the ACA. Like other public health issues, ensuring health literacy is a shared commitment, with the public and private sectors working together toward a common goal. The working group will also work toward mak - ing the prevention information on the website, Healthcare.gov, actionable for all Americans. As noted by Dr. Koh in his foreword to the National Action Plan, health literacy is key to the success of our national health agenda. “It is the currency for everything we do.”

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14 HEALTH LITERACY IMPLICATIONS FOR HEALTH CARE REFORM DISCUSSION Universal Versus Targeted Approach A participant raised the issue of potential tension between the more universal approach that “health literacy is the currency for everything we do,” and the targeted approach discussed by Somers of identifying at-risk populations and focusing resources and interventions specifically toward them. Parekh responded that these two approaches are equally important and need to occur in parallel. Health literacy needs to be enhanced for all Americans in all demographic groups, but at the same time we must real - ize that intensive efforts are needed for particular communities or popula- tions where a lack of health literacy is leading to poor health outcomes. Somers added that private entities, such as health plans in particular, are motivated by opportunities to reduce costs. Their business case for health literacy efforts will revolve around targeted intervention for those that are most likely to experience better health and reduced costs associated with their care. Regardless, health literacy is often an afterthought, retrofit into programs after they are implemented. Health literacy must be incorpo- rated at the beginning, when developing these programs. Making the Business Case in the Absence of Enforcement It was noted that there are no provisions for enforcement or account- ability related to health literacy in the ACA. The Plain Writing Act is also without enforcement or consequences for failing to fulfill the intent of the law. The burden is on those both in government and outside of govern- ment to continue to be strong advocates for health literacy initiatives. A participant said that the HHS Office of Minority Health is working with the individual agency offices of minority health to ensure they are focus- ing on health literacy. While many strategies from the federal government do not actually have enforcement provisions, a participant pointed out that the govern- ment does have the advantage of the bully pulpit. When leaders at the federal level are engaged in an issue, it gets attention. People also believe that even though there may not currently be enforcement, there ultimately will be if they do not comply voluntarily. Somers concurred about the potential impact of the federal bully pulpit. States prefer autonomy and can be highly resistant to federal mandates, but they can be influenced by the federal agenda to take up an important issue. Still, other levers are needed, and one approach is getting the marketplace to see health literacy as something it needs to promote for its own good (i.e., making the busi - ness case for health literacy as a means to reducing costs for insurers). Moderator George Isham asked if, leading up to the expansion of

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15 HEALTH LITERACY AND HEALTH CARE REFORM Medicaid and the implementation of the state-based exchanges in 2014, it would be possible to find or conduct analyses that demonstrate that lower health literacy is associated with higher costs and poorer health outcomes, perhaps data by state or locality to help make the business case to orga- nizations implementing provisions of the law. A participant opined that few good examples exist of specific, targeted health literacy interventions that have been shown to impact costs. However another participant from Missouri stated that the state did an economic analysis that is, in fact, getting the attention of state legislators in terms of the business case for health literacy. He said that it is important to drive the effort to the state level. In that regard, a participant suggested that information about the ACA needs to be tailored to be more useful for people at the state level, to facilitate the transition from legislation to regulation. It was also noted that there are other models in the health field that could help build a business case for health literacy; for example there is both quantitative and qualitative data on cost savings and quality improvements relating to preventable emergency room visits and pre- ventable hospital readmissions. These activities, which incorporate sig - nificant health literacy elements, are not called “health literacy,” however. If one were to ask health plans if they had health literacy programs, they might say no because they call these initiatives “quality improvement.” Somers said that health plans should implement the Test of Functional Health Literacy in Adults (TOFHLA) to identify subsets of their popula - tion that have low health literacy; focus interventions around readability for that population; and then demonstrate that there are differences in hospitalizations and re-hospitalizations associated with that intervention. Quality improvement is important, but there needs to be specific attention to the health literacy aspect. A participant recommended looking to the broader field of health communications for supportive evidence. The October 9, 2010, issue of the Lancet, it was pointed out, has a review article that demonstrates the value of mass media campaigns for changing health behavior and sup- porting public health. Education and Outreach A participant asked whether any provision in the ACA addresses involvement of the Department of Education, state or local school boards, or health education in any other form. Mahadevan responded that noth- ing in the legislation addresses this explicitly, but there is a provision that provides funding for construction and development of school-based health centers. A participant drew attention to the Healthy People Cur-

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16 HEALTH LITERACY IMPLICATIONS FOR HEALTH CARE REFORM riculum Task Force that is focusing on health education from kindergarten through college. A question was raised about HHS outreach and education relative to Section 4103 (Medicare coverage of annual wellness visits providing a personalized prevention plan) and Section 4108 (Incentives for preven - tion of chronic disease in Medicaid) as there appear to be opportunities for health literacy components in these provisions. Parekh responded that there are a number of provisions in the ACA that provide authorization, but not targeted appropriation, including several of the education and outreach campaigns. As such, a collection of activities across the depart - ment will need to come together to achieve these goals. A participant noted that when money is appropriated to a particular agency within HHS, the department does not have total control over how that money is spent. However, health literacy is establishing its place among the social determinants of health, and health literacy efforts should be prominent. Parekh mentioned the Prevention and Public Health Fund created by the ACA, which will award funds for wellness related issues. One of the provisions of the ACA calls for the Department to set up a new web portal where consumers can receive accurate, accessible health information. Parekh noted that healthfinder.gov is already an excellent portal that, in light of no new funding, could be built upon with assets from across the HHS agencies. Moderator Isham referred to the Health Care Ecology Model by Kerr White, and suggested there is an opportunity for an ecology of health information or an ecology of health decisions model, looking at where people are making decisions (e.g., in their homes, in clinical settings), moving beyond discussion of specific literacy tools and measures to how people actually use them. A participant referred attendees to the new AHRQ web-based Elec- tronic Preventive Services Selector that is available as an app and a wid - get. It was also mentioned that there have been discussions about design - ing a contest for the private sector to develop applications that are health literacy-friendly. Mahadevan raised a concern that throughout the ACA there are pro- visions that rely almost exclusively on the Internet for dissemination of information, whether it is enrollment in Medicaid and other public programs, or the creation of web-based tools for personalized prevention planning. Eventually, the issue of computer literacy will also need to be addressed. She noted that text messaging is also being used to spread health care information down to the community level, because texting is something that many people do every day, but they may not be going to health websites every day. Social media strategies (e.g., Facebook or Twit - ter) can also be used to disseminate information to the target audience. A

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17 HEALTH LITERACY AND HEALTH CARE REFORM participant said that there is a movement across the government promot - ing broadband adoption, and also a movement to foster digital literacy, and HHS is very interested in blending digital and health literacy. The role of libraries was also discussed; for example the National Library of Medicine has a very extensive outreach program through the 5,000 members of the National Network of Libraries in Medicine, which also includes some public libraries and community health information centers. When trying to reach an underserved population, a participant emphasized that it important to have a person reach out to those commu - nities to find out what they want, to train people in the community, and to introduce them to the information services that are available to them. In closing the discussion, moderator Isham said that there are many new tools and opportunities. The challenge is to match these with how people in the target populations are actually using health information resources and making health decisions.

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