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5 How Can Health Literacy Facilitate Health Care Reform? George Isham, M.D. HealthPartners It is clear from the workshop discussions that the ACA touches every- thing we do, Isham said. As written, health literacy is not a primary prin- ciple of the new law, and the challenge of incorporating health literacy into mainstream American health care persists. This new legislation will dominate the political debate for some time to come, and implementation will span at least the next decade. In addition to the ACA, there were three other major health policy initiatives in 2010: the National Action Plan to Improve Health Literacy; the Plain Writing Act of 2010; and the launch of Healthy People 2020. We must continue to keep health literacy relevant to these processes, Isham said. The ongoing political debate creates a barrier to helping people understand how provisions of the ACA may help them with their health care. There are competing messages about the reforms, stemming from advertising and positioning statements from both the political left and right. The information the public is getting may not bear any relationship to the reality of the legislation. We need to help people better understand this information so they can act on their own behalf for their own health. The ACA sets new expectations for consumers. Health decisions will need to be made by people with all levels of health literacy. Isham raised several questions for consideration: how will consumers be touched by the tools and initiatives that are already in place; what fraction will be 49

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50 HEALTH LITERACY IMPLICATIONS FOR HEALTH CARE REFORM influenced by government websites, television, advertising of one type or another, or by friends and neighbors, and will the information they obtain be accurate or appropriate? We need to better understand the ecology of health decision making and how to achieve the greatest impact at the population level. Toolkits, websites, and projects are good starts, Isham said, but they are only the very firsts step in a chain of implementations. Another question is how to measure the success of the ACA. Metrics could relate to process, financial gain or loss, or health outcomes. A related question is how to dissect out the impact of health literacy initiatives. Throughout the workshop there was discussion about the relation- ship between quality improvement and health literacy. Researchers may want to study the impacts of quality and literacy in isolation. A practical implementer, however, will need to address these factors together, and in concert with other elements to achieve the desired impact. Prioritizing will be important. There is much to be done, and areas of focus will need to be identified. We must start by understanding what people need to be well, and what they need to get better when they are ill. Isham supported the idea of segmenting by market, in other words, identifying the needs of seniors, children, and other vulnerable or under- served populations. Once we understand what they need, the next ques - tions are what, objectively, is the status of current efforts on those issues, and what should be the short- and long-term goals going forward? The next questions that would follow are, what measures exist to be able to assess implementation for quality improvement and accountability, and what resources are available to be able to take action? It will then be important to continually cycle back to look at customer needs. Isham identified Medicaid expansion as the primary opportunity to impact health literacy. Two targets in the implementation are the exchanges and choice. Health literacy will be a factor for underserved populations in these areas. There are concerns about changes to the delivery system, and we need to think in terms of how health literacy is embedded in health sys - tem transformation. With accountable care organizations, for example, how will shared savings be spent? Will they be returned to the account - able care organizations since they created them? Will they be returned to consumers in the form of lower premiums? Will they be reinvested to address other issues? Another charge for accountable care organizations is to know their populations and be able to measure the health literacy of those they serve. Isham also highlighted the workshop discussions regarding the importance of making the business case for health literacy. Success will involve cultural change, management change, leadership, and innovation.

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51 HOW CAN HEALTH LITERACY FACILITATE HEALTH CARE REFORM? And there must be better connection and cooperation across all political subdivisions (federal, state, and community). Ruth Parker, M.D. Emory University School of Medicine Health literacy is fundamental to health care reform. It is the founda - tion upon which efforts to reduce disparities, reduce costs, and improve quality can be built. We need to find ways to make health literacy a prior- ity on the front-end, Parker said, rather than as an afterthought. Voluntary guidance and good will are not likely to be sufficient, and some level of oversight and enforcement will be needed to ensure that health literacy is addressed. The challenge is how to do this, as it is not written into the law. Parker supported the concept of choice architecture that makes it easier for patients to make good choices. She highlighted enrollment and medication labels as areas where there are prime opportunities for action on health literacy now, as well as the Center for Medicare and Medicaid Innovation funding ideas that are specific to health literacy. There are also opportunities for synergy of ACA-related efforts with the Plain Language Act. Medicine at its simplest is supposed to be about people and their health. Yet providers often end up in silos of their expertise. Providers need to come together and put greater value on the health of the public and the health of patients. Scott Ratzan, M.D. Johnson & Johnson Ratzan expressed concern that while health literacy is at the tipping point, there is a lack of leadership or ownership of the issue, and a lack of enthusiasm for finding the answers. There is a solid evidence base for health literacy. The task now is to take the disparate parts of health reform that are law, and that have some funding, and put together a national action plan or health literacy campaign that links across the different agency areas and efforts. The roundtable can contribute by bringing people from outside fields into the health conversation. Specifically, Ratzan recommended looking to fields such as behavioral economics to learn more about how people make choices. Choices are affected by how something is presented, as well as by misunderstandings. Ratzen noted that he has heard insurers say that communication campaigns do not work and that the focus should be on

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52 HEALTH LITERACY IMPLICATIONS FOR HEALTH CARE REFORM service delivery. This is not the case, and there is a strong evidence base for communications in other fields that can be drawn upon. Government action alone may not be sufficient and public-private partnerships will likely play a role. We need to have strong leadership that will harness the available technology and help develop a campaign of knowledge and skills to reach the public and the learned intermediar- ies, the pharmacists, nurses, physicians, physical therapists, and front-line health workers. GENERAL DISCUSSION Many participants agreed with Ratzan that there is a critical need for leadership on this issue. There has been tremendous progress in terms of a number of organizations that originally seemed unlikely to embrace health literacy, and within different work groups in the government, and there are some health literacy champions within government. But while there is much talk about health literacy being at the tipping point, as of yet there is no valid commitment to begin to implement health literacy in a meaningful way. A participant suggested that some people are waiting to see if health literacy will “go away” and if there will be other priori - ties and funding streams that will take precedence. Health literacy must be embraced and implemented in programs the participant said. In this regard, leadership, both public and private, needs to make a statement of commitment. Another participant suggested that some of the expectations around this legislation are somewhat unrealistic. The ACA will help coverage expansion, he said, but it is only a first step toward health reform. Health literacy can and should be the guiding light for that forthcoming reform. It was also noted that the ACA is focused on health care coverage issues as opposed to health issues. Health literacy has as much to do with health promotion and wellness as it does with the health care delivery system. A participant from a leading health care organization said that they are working to accurately depict what the choices are for what is really a new membership group under health care reform, a generation of indi - viduals who have never had health insurance. It is not just about enroll- ing them, but about giving them a patient experience and a health care delivery system that meets their needs. Health literacy is not separate, but will be manifested in how we do in terms of meeting their expectations and reaching the desired clinical outcomes. Participants discussed the challenges of having so many different tools, developed by so many different organizations (e.g., diabetes fact sheets). It would be helpful and more resource-efficient if there were

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53 HOW CAN HEALTH LITERACY FACILITATE HEALTH CARE REFORM? better coordination in developing standardized, easy to use, and easy to obtain materials. It was also noted that to really make a difference in health literacy, it is important to engage at a community level. States also need to have the opportunity to develop approaches that best reflect their population’s needs. A participant raised a specific concern that under Section 2953 of the ACA (Personal Responsibility Education), funding is restricted to education of young adults on reproductive health (pregnancy preven- tion, sexually transmitted diseases). Health is a lifelong responsibility, he emphasized. In closing the discussion, Ratzan said that with regard to an evidence- based approach to health communications, we know where people get their information. There are ways to reach them by television, radio, friends, mobile phone, digital device, and new technologies. Now is the time to take action and reach out to them. Parker added that throughout the day it was repeated that people do not understand what the ACA is about, and what it means for them individually. She suggested an acces - sible, actionable guide to the ACA, addressing the three target popula- tions that were discussed, vulnerable individuals, children, and senior citizens with health concerns, would be a valuable document.

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