8
Lessons Learned from the Workshop

Isham suggested that the final session be devoted to a collective review of the day’s presentations. To begin, this is a small research field, he said, and there is need for greater collaboration with disparities researchers. Furthermore, there is need for more connections with researchers in other disciplines who bring additional skill sets, as Lisa Cooper said in her presentation. A major question is, how can the field of health literacy research be expanded to add more people, as well as more scope and breadth of disciplines?

The presentations illustrated the two-sided nature of health literacy, Isham continued. One side involves the individual, with a focus on his or her skill set and capabilities, as well as how to prepare individuals to navigate the system. The other side focuses on the complexity of the system itself. This complexity is reflected in the need for clear communication, embedded communication, and process design. Coherent arguments were put forth about the need to standardize the process of care so that the system becomes less chaotic and provides more care. Standardization could incorporate the research lessons from health literacy on how to be more effective in approaching patients.

Another important point made today, Isham said, is that some hypotheses about health literacy are better developed than others. It is important to ask, he said, whether addressing some of these hypotheses will lead to usable and implementable interventions. Researchers will become involved if the work associated with a field is important and will make a difference. What is the mechanism at the front end to



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8 Lessons Learned from the Workshop Isham suggested that the final session be devoted to a collective review of the day’s presentations. To begin, this is a small research field, he said, and there is need for greater collaboration with disparities researchers. Furthermore, there is need for more connections with researchers in other disciplines who bring additional skill sets, as Lisa Cooper said in her pre­ sentation. A major question is, how can the field of health literacy research be expanded to add more people, as well as more scope and breadth of disciplines? The presentations illustrated the two­sided nature of health literacy, Isham continued. One side involves the individual, with a focus on his or her skill set and capabilities, as well as how to prepare individuals to navigate the system. The other side focuses on the complexity of the sys­ tem itself. This complexity is reflected in the need for clear communica­ tion, embedded communication, and process design. Coherent arguments were put forth about the need to standardize the process of care so that the system becomes less chaotic and provides more care. Standardization could incorporate the research lessons from health literacy on how to be more effective in approaching patients. Another important point made today, Isham said, is that some hypotheses about health literacy are better developed than others. It is important to ask, he said, whether addressing some of these hypotheses will lead to usable and implementable interventions. Researchers will become involved if the work associated with a field is important and will make a difference. What is the mechanism at the front end to 

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60 InnovAtIonS In HeALtH LIteRACY ReSeARCH obtain input about the important problems? Is it the clinical part of the researcher’s day that informs those questions? Is it the institution in which the researcher sits? Is there a way to look at a clinical problem in terms of consistently delivering excellent services to a broad population? As the health care system becomes more sophisticated, with auto­ mated recording tools and processes, it inevitably leads to the conclusion that it is important to help individuals cope with the system and its out­ put, Isham said. As the process and consistency of recommendations for delivering care improve, it becomes increasingly important to understand the issues of the patient, how he or she understands and communicates regarding these issues and the system. Health literacy is absolutely central to that, Isham stated. Profoundly understanding people’s needs, prefer­ ences and values, and how science, health care, and medicine interface with those, is becoming more prominent. The National Action Plan (NAP) is exciting and offers a coherent approach that will spawn a whole set of productive questions about next steps. It is a rich start for several conversations on implementing the plan, Isham concluded. Culbert emphasized the role of the community, particularly, in the need for increased community­based participatory research so that the findings can be more easily translated back into the community. Ross called for a focus on the more vulnerable populations. Health literacy needs be viewed in a social construct, acknowledging the social and eco­ nomic components, Ross said, which requires expanding the number of partners to include those in education, finance, health, and policy. Dreyer stated that thinking about disparities, health literacy, and the role of universal versus targeted interventions is key. Are there universal inter­ ventions that will be intensive enough to be given to all, or are targeted interventions the way to go? Do we know, he asked? Rudd’s discussion of the education system was particularly useful, Dreyer said. The education system is broken. When so many students do not learn math or writing or any of the other academic subjects, how can we expect them to learn anything about health? The NAP calls for teach ­ ing children from preschool through university about managing their own health. Are there specific interventions that can be used to promote education, he asked? Barrett shared her appreciation for movement away from looking at an individual’s deficits and moving to evaluate organizations and the environment in which health care delivery occurs. How can the health care system better communicate with patients? Other stakeholders need to be brought to the table; the silos need to come down. Health literacy should begin to disperse into the environment in which people live and work, broadening beyond the health care system.

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6 LeSSonS LeARneD FRoM tHe WoRKSHoP Margaret Loveland, roundtable member from Merck & Co., said she was pleased to see the move from theoretical to practical; that commu­ nity involvement is key and implementation skills are the place to focus. Furthermore, she said, the IT discussions were stimulating, especially the idea of using cell phones in an emergency to give crucial information such as how to use an inhaler or an asthma action plan. There were many good implementation ideas discussed, Loveland said. Wong emphasized that social justice is a convergent factor around health literacy and health disparities. It is important to stop thinking about patients as passive recipients of care and to see them as actively involved in defining what care means to them. Consumers need to be empowered to proactively define their needs for maintaining their health, which in turn defines their core value systems. This has ramifications for examining the health care system, which is basically a sick care system. Under health care reform 30 million people who have been marginalized will be newly covered, resulting in tremendous social empowerment issues. It will be critical to not exacerbate disparities as the opportunity is presented to bring these individuals into the system, Wong said. In terms of broad outreach or universal interventions versus focusing on vulnerable populations, Humphreys said she appreciated Schillinger’s suggestion that programs be available for everyone, with more time and depth offered for people who need it. She also agreed with Isham on the need for a redesign of the process of health care. But the concern is that health IT will be implemented without redesign of health care processes. Designing health literate health IT systems can help. Ensuring greater access to better information for patients at the same time as providing bet­ ter training for patients may be easier than redesigning the system once to accommodate health IT and then later redesigning it again to address health literacy issues. The National Library of Medicine’s (NLM’s) mis ­ sion aligns nicely with the NAP goal of developing and disseminating health information that is understandable. NLM has a national network of libraries of medicine and connections with public libraries and other community organizations. There will be a lot of interest at NLM in build ­ ing strategies that relate to its network and existing activities. Wilson­Stronks said she gained understanding from the presenta­ tions on the need to collaborate, to break down silos, and to link multi­ ple initiatives within organizations. Martha Gragg, roundtable member from Missouri Foundation for Health, said she is excited about sharing the NAP with the communities and organizations the foundation works with. She hopes the NAP will help in tracking what the foundation can affect and what it cannot. She also agreed that the health literacy of the provider is as important as that of the patient. Providers need to enhance their health literacy skills. One key is the power of observation on the

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6 InnovAtIonS In HeALtH LIteRACY ReSeARCH provider side. It requires ongoing observation of patient understanding and perception. It is a difficult but important thing to research because it affects outcomes. Partida reflected on the importance of maintaining a balance between health literacy research aimed at understanding the needs of and develop­ ing interventions for individual patients on the one hand and research on health system complexity needs for health literacy on the other. Health systems are driven by policy, funding, and licensing requirements. Man­ aging such an organization while being responsive to individual patients can be a daunting task. Health literacy must be simultaneously addressed from both the patient perspective and the delivery system perspective while also recognizing diversity at each of those levels, Partida said. Linda Harris, roundtable member at the Department of Health and Human Services (HHS), reminded the group that health literacy is an underlying theme of many of the Healthy People 2020 objectives that have to do with health communications and health information technol ­ ogy. The Healthy People 2020 document has been completed and is in the review and clearance process at the HHS. Ratzan highlighted the need for increased transdisciplinary research. The idea of behavioral economics is also important, he said, and sug­ gested that the book nudge may have some lessons for health care reform (Thaler et al., 2008). There are approaches to adding behavioral incentives for everything from organ donations to choices in Medicare and Medicaid. There are clearly activities where health literacy can be integrated in CMS activities. Furthermore, health literacy is important to health care reform in many ways. These efforts can lead to better patient outcomes and public health outcomes and play into cost effective delivery of care in the 21st century, Ratzan said. Isham closed the session by thanking all the participants for their thoughts and contributions.