6
A Call to Action

THE NATIONAL ACTION PLAN TO IMPROVE HEALTH LITERACY

Cynthia Baur, Ph.D.

Centers for Disease Control and Prevention


The release1 of the National Action Plan to Improve Health Literacy2 (NAP) is a collaborative effort that began in 2003, with financial, moral, and intellectual support from several of the Department of Health and Human Services (HHS) agencies. Congratulations to all of the members of the HHS Health Literacy Workgroup for bringing this plan to fruition.

For a brief history, the Healthy People objectives were first launched in 2000,3 which was the first time there was a national health objective on health literacy. Both the 2010 and 2020 updates4 contain health literacy and related objectives. Healthy People was followed by the National Institutes of Health/Agency for Healthcare Research and Quality (NIH/AHRQ) program announcement to fund research, which was one of the first efforts to begin to establish the evidence base for health literacy as a major public health problem. The National Assessment of Adult



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6 A Call to Action THE NATIONAL ACTION PLAN TO IMPROVE HEALTH LITERACY Cynthia Baur, Ph.D. Centers for Disease Control and Prevention The release1 of the National Action Plan to Improve Health Literacy2 (NAP) is a collaborative effort that began in 2003, with financial, moral, and intellectual support from several of the Department of Health and Human Services (HHS) agencies. Congratulations to all of the mem­ bers of the HHS Health Literacy Workgroup for bringing this plan to fruition. For a brief history, the Healthy People objectives were first launched in 2000,3 which was the first time there was a national health objective on health literacy. Both the 2010 and 2020 updates4 contain health literacy and related objectives. Healthy People was followed by the National Institutes of Health/Agency for Healthcare Research and Quality (NIH/ AHRQ) program announcement to fund research, which was one of the first efforts to begin to establish the evidence base for health literacy as a major public health problem. The National Assessment of Adult 1 See http://www.hhs.gov/ophs/news/20100527.html. 2 See www.health.gov/communication/HLActionPlan. 3 See http://odphp.osophs.dhhs.gov/pubs/HP2000/. 4 See http://www.healthypeople.gov/. 

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0 InnovAtIonS In HeALtH LIteRACY ReSeARCH Literacy5 and the Institute of Medicine report (IOM, 2004) were both semi­ nal events. 2006 is the year when those involved started to envision the need for a plan to pull everything together. The Surgeon General’s office ran a 2006 workshop to examine the scientific basis for health literacy as a public health problem.6 Many of the people at today’s workshop pre­ sented at that event. Town hall meetings followed in 2007­2008 in four cities: New York City; St. Louis, Missouri; Sacramento, California; and Tampa, Florida. A draft plan was produced in January 2009 and the year was spent obtaining input from about 100 organizations. As one can see, a very participatory approach was used to develop the plan. The vision articulated in the NAP holds a society­wide perspective on health literacy which is consistent with the IOM view (IOM, 2004). That vision is of a society that • provides everyone access to accurate, actionable health information; • delivers person­centered health information and services; and • supports lifelong learning and skills to promote good health. The plan also calls for a response from all sectors involved in health information and services. The plan has seven goals that relate to the notion that every sector has a role to play. Those seven goals are as follows: 1. Develop and disseminate health and safety information that is accurate, accessible, and actionable. 2. Promote changes in the health care system that improve health information, communication, informed decision­making, and access to health services. 3. Incorporate accurate, standards­based and developmentally appro­ priate health and science information and curricula in childcare and education through the university level. 4. Support and expand local efforts to provide adult education, English language instruction, and culturally and linguistically appropriate health information services in the community. 5. Build partnerships, develop guidance, and change policies. 6. Increase basic research and the development, implementation, and evaluation of practices and interventions to improve health literacy. 7. Increase the dissemination and use of evidence­based health literacy practices and interventions. 5 See http://nces.ed.gov/naal/. 6 See http://www.surgeongeneral.gov/topics/healthliteracy/toc.html.

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 A CALL to ACtIon HEALTH LITERACY RESEARCH IN ACTION: EMPOWERING PATIENTS AND IMPROVING HEALTH CARE QUALITY Carolyn Clancy, M.D. Agency for Healthcare Research and Quality (AHRQ) Today’s release of the National Action Plan to Improve Health Liter­ acy is something to be very proud of. It is clear from an AHRQ supported systematic review of all the studies done in health literacy several years ago (Berkman et al., 2004), that individuals with lower literacies have less health­related knowledge, increased incidence of chronic disease, poorer intermediate health markers, and less than optimal use of preven ­ tive health services. The report has been updated recently with 114 new articles, 13 that specifically address numeracy, and 33 that address inter­ ventions. The peer review draft of the update became available for com ­ ment on June 10.7 The full report will be available in the fall of 2010. Before we can address a problem, awareness of the problem must be very high. Collectively, we have done a good job of raising awareness. Addressing the public health problem of health literacy requires collabo ­ ration. Research should inform healthcare providers and facilities, public health officials, health communicators and educators, government agen ­ cies, producers of health and safety information, drugs, and devices; and payers and purchasers (including employers). Let me share with you a personal experience of how my own aware­ ness was raised. When I was a new health maintenance organization (HMO) doctor I gave my patients a simple form to fill out to gather infor­ mation. To my surprise, many of the forms were returned unfinished or blank—because my patients were not able to fill them out. I learned that if the patients could not complete the form alone, we could do it together. It was easy to remedy the problem once I learned there was one. But it always shocks me to realize that had I not decided to use a form to col­ lect information, I would not have known that some of my patients could not read. Health literacy plays an important role in empowerment and health ­ care quality. The recently passed Patient Protection and Affordable Care Act8 creates an enormous space and opportunity that has not existed before. The National Action Plan furthers these transformational goals by calling for accurate, accessible, and most importantly, actionable infor­ mation. How do we present information in a way that people not only understand, but know what they need to do next? This calls for improved 7 See http://effectivehealthcare.ahrq.gov. 8 See http://thomas.loc.gov/cgi­bin/query/z?c111:H.R.3590.as:.

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 InnovAtIonS In HeALtH LIteRACY ReSeARCH communication, including informed decision making. Patients must feel they actually have a choice. Patient empowerment cannot happen unless there is an informed conversation where options are presented in an understandable way. It is this aspect of health care that is lacking in many settings. Increasingly, patients will need information about both the quality and cost of their options. We face a long­term educational challenge as well as short­term chal­ lenges in identifying the interventions that can be evaluated and put in place right now. What kind of research is needed? We need research that goes beyond raising awareness that offers better measures of health literacy for more precise targeting of efforts to intervene. Those targeted interventions need to be evaluated. When an intervention is promising, work must be done to figure out how to disseminate it effectively. The one study that represents scalability and spread is the Michigan Keystone Project (Pronovost et al., 2006), which was about educating providers. Very few other interventions in health care have attained such widespread uptake of a successful intervention or program. In terms of measurement, there needs to be expansion beyond literacy­ based measures, Clancy said. For example, measures of health literacy that could be used on a telephone survey would create huge research opportu­ nities. Ultimately, we need to get beyond individual measures and create national and community population measures. It would be extraordinarily helpful to clinicians to have some sense of the prevalence rate, as they often do for other conditions. For example, how likely is it that people from a particular area will have difficulty understanding information? That is part of the proactive nature of health care that will be part of the transformation journey we are launching here. For 15 years, AHRQ has been in the business of supporting devel ­ opment of patient experience of care surveys, namely the Consumer Assessment of Healthcare Providers and Systems (CAHPS®). There is now a supplemental item set to help identify the patient’s perspective on organizational health literacy. What is needed now are some specific health care quality measures to support quality improvement work. It is very exciting that there were 33 published articles on intervention evaluations considered of sufficient quality to include in the latest sys ­ tematic review. Yet the following are unanswered questions that urgently need to be addressed: • How do we motivate patients to seek reliable health information and use it to make decisions? • How do we overcome numeracy deficits in risk communication? • What graphics enhance understanding? • How do we effectively train practitioners?

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 A CALL to ACtIon • What are effective methods of teaching developmentally appropri­ ate health curricula at each age? • How do we make health systems easier to navigate? In outpatient care, the average patient asks 1.5 questions from the time he or she arrives until leaving the office, and that includes questions about parking (Kaplan, 1991). It is very important to help people under­ stand that their role has to be more participatory. How do we get target audiences to embrace evidence­based prac­ tices? The good news in terms of improving care overall is that there is a growing list of promising practices, but they are not widely used. To foster widespread use requires collaboration with business people, with leaders of healthcare organizations, with consumer groups, and many others. Taking health literacy interventions to scale requires that we answer some difficult questions. What kinds of tools are most helpful with which audiences? What economic arguments are persuasive? Health literacy interventions suffer from the same kind of challenge that many issues do. That is, it sounds good and it appears to be the right thing to do, but it is going to cost resources. Identifying that while there may be some upfront costs, there is likely to be savings in terms of such things as reduced readmissions or reduced problems in managing chronic illnesses is important. How do we engage in effective partnerships with those outside the health system who have a profound influence on health literacy and outcomes? We have to think creatively about the universal pass­through points that can serve as the locus of health literacy interventions. Pro ­ grams through churches have been successful, but only for people who go to church. What about more universal conduits, such as Verizon and the Department of Motor Vehicles? We have to expand our imaginations regarding community partners. It is time to think about how to effectively implement interventions, Clancy said. An AHRQ­funded project called Project RED for reengineering discharge was developed at Boston University Medical Center. A random­ ized trial involved a nurse and a pharmacist giving patients focused atten­ tion at discharge and continuing follow­up with patients after discharge as an approach to reducing readmissions and emergency department visits (Jack et al., 2009). The issue of potentially avoidable readmissions is high on policy makers’ minds, as evidenced by the health reform bill. A new tool cre­ ated for populations with lower health literacy may help. The Health Literacy Universal Precaution Toolkit9 is a Web­based toolkit to help adult 9 See http://ahrq.gov/qual/literacy.

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 InnovAtIonS In HeALtH LIteRACY ReSeARCH and pediatric primary care practices implement health literacy measures. Produced for AHRQ by the University of North Carolina, it includes a six­step plan and 20 short tools to identify and address areas needing improvement. In the first few weeks after publication, it was downloaded nearly 9,000 times. Researchers also must follow health literacy practices. AHRQ has developed the AHRQ Informed Consent and Authorization Toolkit for Minimal Risk Research.10 The aim is to include low literacy popula­ tions in research and to ensure that consent and authorization is truly informed. Where should we go from here? AHRQ supports user­driven research to answer questions that would­be users are asking and that involves would­be users in research design. This means going beyond the peer­ reviewed article: creating tools and guides, writing trade press articles, training, leveraging opinion leaders, even pulling in Hollywood writers, since many people get their health information from television shows. It is important, Clancy said, that health literacy research makes a difference in peoples’ lives. HEALTH LITERACY RESEARCH: LOOKING TOWARD A NATIONAL AGENDA Raynard Kington, M.D., Ph.D. national Institutes of Health The National Institutes of Health (NIH) fully supports the creation of this action plan. The foreword to the plan, written by Dr. Howard Koh, clearly articulates the need to advance our understanding of the problem of health literacy and the tools available to create health lit ­ eracy interventions that will result in a positive way on the health of populations. Since 2004, the NIH has had a program announcement focusing on understanding and promoting health literacy. It has been reissued three times; most recently in 2010. A wide cross­section of NIH institutes and centers signed on to support research under this RFA (request for applica­ tion), as did AHRQ and the Centers for Disease Control and Prevention (CDC), our colleagues who have devoted so much attention to this topic. The goal was to encourage empirical research on health literacy concepts, 10 See http://www.ahrq.gov/fund/informedconsent.

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 A CALL to ACtIon theory, and interventions, through mechanisms ranging from the standard R0111 research grant to smaller R2112 and R0313 grants. The specific objectives of program announcement PAR­10­133 included health literacy as a key outcome; health literacy as a key explanatory vari ­ able for some other outcome; methodological or technological improve­ ment to strengthen research on health literacy; and/or prevention and/or intervention strategies that focus on improving health literacy. The scope is broad, from basic research to applied research, especially studies focused on incorporating individual, family, community, or health system and soci­ etal mediators of health literacy. Secondary analyses of existing datasets were also supported. A total of 77 grants were funded through the first two cycles for more than $64 million. An analysis of 71 of those 77 grants shows that a majority were inter­ vention studies (42 percent), followed by descriptive studies (30 percent), measurement and methods (25 percent), and a few basic mechanisms and pathways (3 percent). This illustrates a problem: we do not know enough about fundamental mechanisms that underlie the relationships between health literacy and a range of health outcomes. In addition to the pro ­ grams funded through the program announcement, NIH supported an additional $218 million worth of research between 2002 and 2009, across an array of institutes and centers. These range from studies looking at the relationship between educational status and structure of the brain to interventions and dissemination research. This is more evidence of NIH’s strong commitment and recognition of the relationship of health literacy to many of the goals that are part of our mission. The NAP Goal 6—Research that supports basic behavioral research and the development, implementation, and evaluation of practices and interventions to improve health literacy—clearly represents a great oppor­ tunity for more basic research that will help in understanding fundamen ­ tal, causal pathways. The NAP encourages behavioral research on several levels including the following: 11 “The Research Project (R01) grant is an award made to support a discrete, specified, circumscribed project to be performed by the named investigator(s) in an area representing the investigator’s specific interest and competencies, based on the mission of the NIH.” (http://grants.nih.gov/grants/funding/r01.htm). 12 “The R21 grant mechanism is intended to encourage exploratory/developmental research by providing support for the early and conceptual stages of project development.” (http://grants.nih.gov/grants/funding/r21.htm). 13 The R03 grant mechanism will support small research projects that can be carried out in a short period of time with limited resources.” (http://grants.nih.gov/grants/funding/r03. htm).

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6 InnovAtIonS In HeALtH LIteRACY ReSeARCH • Identify and address gaps, such as numeracy and visual commu ­ nication, in health literacy research. • Develop more rigorous and comprehensive methods to measure individual and population health literacy skills that capture the full range of skills including listening and speaking, writing, numeracy, and cultural and conceptual knowledge. • Develop methods to measure the full range of health literacy skills of health professionals and organizations. • Explore technology­based interventions to improve health literacy. • Develop and implement health literacy interventions based on the ­ ories and models—drawing from such related disciplines as com­ munication, education, cognitive science, and medical sociology. • Include health literacy measures in national and other surveys (ODPHP, 2010). At NIH, this research is distributed across institutes and centers, but there is an effort to improve coordination and identify gaps for funding. OptNet opportunity network is providing more than $30 million to look at the broad topic of basic behavioral research. Not surprisingly in many areas of research, including this area, some basic issues of methods and measures are often a core part of the gap that is identified. The NAP’s Goal 7 focuses on increasing dissemination and use of evidence­based health literacy practices and interventions. The NIH is interested in doing a better job of translating research results for use in real­world settings. One of NIH Director Francis Collins’ five priorities is to fund research that is relevant for health care reform. A big part of this priority is helping us disseminate the evidence we have so that it is more widely used across populations. The NIH has a long history of funding support in the area of dissemination and implementation research.14 There is also an annual NIH conference sponsored by the office of Behavioral and Social Sciences Research that focuses on the science of dissemination and implementation. Health care reform and renewed interest in com­ parative effectiveness research make this work particularly important. NIH is committed to funding research in health literacy, Kington said, and sees it as an essential part of facilitating the translation of advances in basic research into improvements in health in real­world settings. Increas­ ing our investment in dissemination and translation will help ensure that the evidence we support is actually used. 14 See http://grants.nih.gov/grants/guide/pa­files/PAR­10­038.html; http://grants.nih. gov/grants/guide/pa­files/PAR­10­039.html; http://grants.nih.gov/grants/guide/pa­files/ PAR­10­040.html.

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 A CALL to ACtIon DISCUSSION Arthur Culbert, roundtable member from Health Literacy Missouri, which hosted one of the town meetings in St. Louis, expressed excitement about the NAP. Because there is a great deal of activity in health literacy, he said, several states (Iowa, Minnesota, Wisconsin, Arkansas, and Mis ­ souri) have come together to form Health Literacy USA. The aim is to leverage efforts and move forward to put this National Action Plan into use within each state. Health Literacy USA can serve as a model for get ­ ting the important health literacy research onto the streets. With a focus on practicality and measuring impact at the community level, Ross asked if tools such as Consumer Assessment of Healthcare Pro­ viders and Systems (CAHPS) have been validated at the community level and whether its use could be expanded. Brach responded that CAHPS has been rigorously developed in terms of cognitive and psychometric testing, but it has not been tested at the community level as a lever for change and improvement. Groups are beginning to use health literacy CAHPS, and AHRQ has a project to further investigate the use of CAHPS in improving and measuring quality improvement in the primary care practice. AHRQ is accepting applications on a rolling basis. Ratzan suggested the need to look beyond clinical health literacy. That is to expand the focus from one of health being delivered in the health care setting to health being delivered in the societies in which people live. How do public–private partnerships fit in to this, he asked, and where does the funding need to come from? Where are the foundations and other parts of society that will be important? The advances in public health have not all come from government­driven systems but are often driven by private foundations. He challenged the group to devise a frame­ work to foster public—private partnerships for health literacy, involving payers and providers, as well as private companies. Baur responded that a formal partnership structure has not been highlighted in the NAP, but that the efforts of Health Literacy USA could be viewed as one type of such effort. That is an example of how efforts in health literacy can go beyond what is in the NAP. Research and creativity should not stop with the publication of the NAP. Baur challenged organizations to take the NAP and use it as the framework to, for example, elaborate partnerships, which is covered in Goal 5. Brach agreed that there is no global partnership framework, but the NAP enu ­ merates the partners that need to be included. AHRQ is working with private partners that are health plans, developing a health plan version of the health literacy CAHPS tool for them. Kington added that the NIH is very supportive of public/private partnerships, though there can be difficulties. In health literacy, at least there would not be fights over intellectual property as there are in some research fields. The NIH Foun ­

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 InnovAtIonS In HeALtH LIteRACY ReSeARCH dation is another mechanism; CDC has a similar foundation. The goal is to facilitate public/private partnerships with industry, for example, in precompetitive space. Dreyer added his congratulations, calling this a “great moment.” He plans to use the NAP in conversation with American Academy of Pediatrics leadership to say, “This is where we need to begin.” But the reality is that only five states and one or two health plans are excited about the National Action Plan. Professional organizations can play a role in changing behavior of physicians and health care providers too. What are the plans for engaging them and what can the roundtable to do help, Dreyer asked. Brach acknowledged the limitations of working with one partner at a time. AHRQ is trying to make health literacy a part of everything it does. It is trying to feed tools to empower partners to move forward, whether they are visiting the health care innovations site, downloading podcasts in Spanish for consumers, or looking at consumer guides. Baur added that each of the government agencies involved has its own constituencies to reach. She wants to explore how the roundtable can help get the word out so that each organization takes the NAP and uses it to inform its thinking and set priorities. She expects to be on call to offer technical assistance, give talks on the plan, and help create tools. Sharon Barrett, roundtable member from the Association of Clini­ cians for the Underserved, asked if there are plans to work with those who produced the National Partnership for Action to End Health Dis ­ parities.15 The two major plans that are looking at collaborations at the national, regional, and local levels could come together and coordinate their efforts. Baur replied that several agencies that are active in health disparities are represented in the NAP. Guadalupe Pacheco from the Office of Minority Health, HHS, is a member of the work group. There is a lot of cross­talk between health literacy and health disparities, and there have been conversations about proposing new objectives within the health communication/health IT (information technology) framework around health disparities and health literacy. Kington added that the NIH is in the next cycle of the NIH strategic plan for health disparities and minority health research and this area of research is clearly going to be part of that plan. 15 See http://minorityhealth.hhs.gov/npa/.