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Suggested Citation:"5 Break Out Session Reports." National Academies of Sciences, Engineering, and Medicine. 2016. Integrating Health Literacy, Cultural Competence, and Language Access Services: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/23498.
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5

Break Out Session Reports

Upon conclusion of the panel presentations and discussions, the workshop participants divided into three preassigned small breakout sessions to discuss research, policy, or services and care. Janet Ohene-Frempong, president of J O Frempong & Associates, facilitated the research discussion session; and both Michael Paasche-Orlow, associate professor of medicine at Boston University School of Medicine, and Rima Rudd, senior lecturer on health literacy, education, and policy at the Harvard T.H. Chan School of Public Health, served as the rapporteurs. Gem Daus, public health analyst in the Office of Health Equity at Health Resources and Services Administration (HRSA), facilitated the session on policy, and Michael Villaire, chief executive officer of the Institute for Healthcare Advancement served as the rapporteur. Andrew Pleasant, senior director for health literacy and research at the Canyon Ranch Institute, facilitated the services and care discussion and also acted as the rapporteur. After the rapporteurs delivered their summaries of the discussions to the reassembled workshop participants, Bernard Rosof moderated an open discussion.

RESEARCH

Michael Paasche-Orlow reported there was a great deal of discussion about the need to break out of the silos dominating these three fields, at least in part because of how poorly funded these areas have been. One reason for the limited funding may be that there is no good home at NIH or other federal agency from which funding for integrating literacy, language, and culture could originate. One suggestion was that AHRQ could serve as a

Suggested Citation:"5 Break Out Session Reports." National Academies of Sciences, Engineering, and Medicine. 2016. Integrating Health Literacy, Cultural Competence, and Language Access Services: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/23498.
×

home agency for integration research, but so far, AHRQ has not taken a lead in this area. Paasche-Orlow said that he wanted to emphasize the point that if integration research is going to take off, there must be adequate funding.

He then reported discussing a broad range of options for developing a common research agenda for literacy, language, and culture, with much of the discussion focusing on communication, systems, health outcomes, and building a business case. Rima Rudd also noted the discussion about the need for more research to support the value argument, and in particular, about the need to improve the quality of the data collected using available metrics. Paasche-Orlow added that those in the session were generally shocked by how poor data quality has been, and reminded the workshop of the NCQA data showing that perhaps as few as one-quarter to one-third of hospitals report on basic measures. Rudd commented that this is an issue of rigor, and that there are many important questions ready to be addressed if researchers can do better at producing high-quality data.

Rudd reported the discussion raised the point that while there is intervention research, there are too few interventions to study, at least in part because there has not been enough research to inform the design and development of interventions. This session also talked about the need to look at concordance within the larger context of different attributes and qualities of a system, and about the need when doing research to understand not only the patient, but also the provider, the quality of the interaction between patient and provider, and the context in which that interaction occurs.

POLICY

Michael Villaire reported that this breakout session discussed a wide range of policies and the challenges of moving some of these policies forward. He said one of his takeaway messages from the discussion was that boldness and leadership play a strong role in getting new policies in place. “I think the area in which there’s going to be movement and traction are going to be those put forward by the visionaries, by the leaders, the ones who have the great ideas,” said Villaire. He cited a phrase that came up during the discussion: “Policies are for followers, not leaders,” and he said leaders are the ones who initiate change on their own. He cited North Shore–LIJ being a good example of how strong leadership can lead to integration of programs to reduce disparities and encourage inclusion, and he commented that the motivating factor for North Shore–LIJ was the carrot rather than the stick, that policy change happened because leadership felt it was the right thing to do. Villaire also reported the issue of unfunded mandates came up frequently in the discussion. “It is difficult if not impossible to put out a mandate for which there is no funding and expect there to be complete compliance with it,” said Villaire.

Suggested Citation:"5 Break Out Session Reports." National Academies of Sciences, Engineering, and Medicine. 2016. Integrating Health Literacy, Cultural Competence, and Language Access Services: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/23498.
×

Another thread in the policy discussion dealt with the differences between NCQA’s standard accreditation policies and the ones tied to its Multicultural Healthcare Distinction accreditation. Some of the participants wondered whether these two sets of policies could be homogenized, and the discussion noted that cost was the main barrier to homogenization.

The policy session had some discussion about possible approaches to engage with those groups that are most affected by health disparities and inequities and learn from their experiences in order to provide care services that would more effectively meet the needs of those groups. The discussion cited Massachusetts’s listening sessions as an example of positive engagement and learning. At these sessions, individuals can discuss concerns and steps they would like to see the state take to improve services, and in some but not all cases, new policies result from those comments. Similarly, he reported, Arkansas has created patient advisory committees as another means of interacting more effectively with affected populations.

The theme of community involvement also came up, Villaire noted, when the discussion tried to identify additional approaches for submitting desired changes or tweaks to existing regulations to help incentivize practitioners to implement some of those changes. “In the end, we said we need more voices from the populations that are affected,” said Villaire in summarizing that part of the discussion. He added that there are different ways to bring the community voice to policy discussions, but that bold solutions are truly needed. “To put it in a different perspective, we have been using a transactional approach of tinkering with policies,” said Villaire, but his takeaway from the discussion was that the current system is untenable and needs more complete systems change. Again, he said, participants in the session noted the importance of leadership, and the suggestion was made to approach the head of CMS with a list of changes that need to happen and then have a discussion on how to implement those changes.

SERVICES AND CARE

Andrew Pleasant reported on the discussion of services and care, noting that health literacy has come a long way, particularly in terms of an attitudinal shift regarding the power of health literacy to improve health. At the same time, some members of this breakout session noted that the effort to integrate health literacy with language access and cultural competence to create effective approaches for improving outcomes for all patients is still in its infancy. The session tried unsuccessfully to identify terms that could sum up these three areas with some participants noting that there is a need for new language to describe this effort. Many pointed out that “what gets measured gets managed,” but identifying what should be measured was beyond what the discussion could accomplish. There was also some dis-

Suggested Citation:"5 Break Out Session Reports." National Academies of Sciences, Engineering, and Medicine. 2016. Integrating Health Literacy, Cultural Competence, and Language Access Services: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/23498.
×

cussion about how, where, and who to measure and noted that what gets measured is a dynamic state.

Pleasant said his takeaway from the discussions is that though health literacy is perhaps furthest along in development, it still has a long way to go, as do language access and cultural competence. Members of the session noted that health literacy includes both communication and navigation, requires a strong skill set, and can suffer from unconscious bias. He reported that there had been a good discussion about two aspects of cultural competence, one of which was that cultural competence and similar terms are often used as a surrogate for race, racism, and ethnicity without having to have a frank and proper discussion. At the same time, he said, while there is much diversity in training, the core issue of racism and ethnic discrimination needs to be elevated to “decompress the privilege of cultural competency” so it can be truly tackled in a sufficient and effective manner.

During the course of the discussion it became apparent, Pleasant reported, that many of the those in the session did not believe the nested dolls metaphor given earlier was appropriate. Several felt that integration of literacy, language, and culture leads to talking with someone rather than talking to them, and leads to the individual receiving appropriate information rather than simply being told something. There was a challenging discussion about what appropriate means in terms of appropriate to whom. He summarized that discussion by posing a set of questions: “If it is appropriate to the patient, is that a valid outcome? If it is appropriate to the health system is that then an invalid outcome? And what does an informed decision really mean if the patient says no to what the health care system thinks is ‘appropriate’?” he asked. As an attempt to identify the master rubric for this area, some members in the session suggested the phrase bidirectional communication, but Pleasant said they did not come up with a real answer.

The possibility of going after low-hanging fruit was discussed, with attempts to identify some of those. One was time—the goal should be to change the amount of time a health care professional has to spend with people. As an aside, Pleasant said he is on a personal campaign to eliminate the word patient and to use the word person instead. He then reported that one person suggested “providing rational enlightenment by honoring all people and asking them what is important.” Another person suggested the solution was to conduct a thorough examination of all the polices that relate to these three areas, collect input on them through engagement with individuals and communities, evaluate them to identify which ones are working and which are not, and promote those that do work and make changes to those that do not. A final suggestion was to look at accreditation across the range of health services and health professions and identify where health literacy, cultural competence, and language access are and are not being adequately represented and change those for which they are not.

Suggested Citation:"5 Break Out Session Reports." National Academies of Sciences, Engineering, and Medicine. 2016. Integrating Health Literacy, Cultural Competence, and Language Access Services: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/23498.
×

DISCUSSION

Christopher Dezii from Bristol-Myers Squibb asked if the research session discussed the concept of relevant outcomes. “Can a health literate person be identified as an outcome that can be codified?” he asked, adding that his impression from the day’s presentations and discussions was that cultural competence and language access activities are about improving bidirectional input and patient understanding. Ohene-Frempong said they did discuss this, and one suggestion to come out of that discussion was to measure health outcomes, not health literacy, to take the focus off the person and put it more on the provider. The discussion raised the point that if providers are effective in the way they communicate with people across health literacy levels, across languages, and across different cultural perspectives, then they should be managing their hypertension or diabetes more effectively and that is something that can be easily measured.

Paasche-Orlow added that some roundtable members are working on what he called a “definitions paper” that, among other topics, aims to define the nature of the outcomes that could be measured. “This is a fair topic and something we should be talking about, and it gets, more broadly speaking, into the definition of health literacy,” said Paasche-Orlow.

Jennifer Dillaha from the Arkansas Department of Health commented that the importance of strong leadership was a common thread in the three breakout discussions and wondered if one should promote health literacy leadership, particularly given the example of how North Shore–LIJ took action through strong leadership rather than because of a policy mandate. This idea, she said, prompted her to reflect on her view that health literacy is a skill set used outside of the health system and one linked closely to social determinants of health. That, in turn, led her to the idea that there needs to be an effort to increase the health literacy of policy makers so they can get, understand, and use health-related information to make decisions not just for their own health but for their constituents, too. In the end, she said, this comes back to a leadership issue—leadership by people at her level of government who can try to influence legislators in her state, and leadership at the level of health systems and in the community—and wondered if there were something the roundtable could do to ignite an effort to address health literacy among policy makers.

Paasche-Orlow thought this was an intriguing idea and asked if any of the workshop participants had any experience in developing leadership at the state level to inform policy on health in that state. Catina O’Leary from Health Literacy Missouri said her organization works at the state level and agreed with Dillaha’s comment about the importance of leadership. In Missouri, she said, leadership at the highest levels of state government say that addressing health literacy is very important and as a result,

Suggested Citation:"5 Break Out Session Reports." National Academies of Sciences, Engineering, and Medicine. 2016. Integrating Health Literacy, Cultural Competence, and Language Access Services: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/23498.
×

change is happening, though not universally. “Every policy is dictated by the people who put their hands on it and make things go forward or not,” said O’Leary, which makes broad-based partnerships so important to turning policy into action. She explained that Health Literacy Missouri has an 18-month contract with the state to work with advocates on redesigning forms and processes, particularly for the state’s Medicaid program. Her experience shows that it is all about the people in Missouri Department of Health and Human Services who decide which forms are problematic and the people in the print shop and what they allow to happen. So while leadership from the top is important, so too is leadership at other levels in the process of change.

Jessie Sherrod, a practicing physician and former Robert Wood Johnson Foundation clinical scholar, commented that there are so many variables that affect health that leadership from the highest levels—perhaps the surgeon general—is needed to ensure that health considerations are part of a broad range of policy discussions, including those on environmental policies, nutritional policies, and education. Rosof, who noted that the policy discussion raised the idea of involving the surgeon general, thought there was an opportunity for the roundtable to advocate for the surgeon general to create a bold initiative, just as was done for smoking, to make the integration of health literacy, cultural competence, and language access a national priority and get ahead of the demographic changes occurring in the United States.

As a final comment, Alicia Fernandez said she was troubled by the fact that the NCQA is having difficulty getting commercial plans to collect and report data on race, ethnicity, and language despite the fact that the community has been saying for the past 15 to 20 years that these data are essential to moving forward. She was also struck by the challenging discussions about making a business case for integrating literacy, language, and culture versus making integration a matter of return on investment or value or equity or part of a patient safety initiative, or all of these. She said she would feel more optimistic if there could be a discussion about how the National Academies of Sciences, Engineering, and Medicine and other organizations could move more boldly and think about which levers need to be pushed to truly move these efforts forward.

Suggested Citation:"5 Break Out Session Reports." National Academies of Sciences, Engineering, and Medicine. 2016. Integrating Health Literacy, Cultural Competence, and Language Access Services: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/23498.
×
Page 67
Suggested Citation:"5 Break Out Session Reports." National Academies of Sciences, Engineering, and Medicine. 2016. Integrating Health Literacy, Cultural Competence, and Language Access Services: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/23498.
×
Page 68
Suggested Citation:"5 Break Out Session Reports." National Academies of Sciences, Engineering, and Medicine. 2016. Integrating Health Literacy, Cultural Competence, and Language Access Services: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/23498.
×
Page 69
Suggested Citation:"5 Break Out Session Reports." National Academies of Sciences, Engineering, and Medicine. 2016. Integrating Health Literacy, Cultural Competence, and Language Access Services: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/23498.
×
Page 70
Suggested Citation:"5 Break Out Session Reports." National Academies of Sciences, Engineering, and Medicine. 2016. Integrating Health Literacy, Cultural Competence, and Language Access Services: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/23498.
×
Page 71
Suggested Citation:"5 Break Out Session Reports." National Academies of Sciences, Engineering, and Medicine. 2016. Integrating Health Literacy, Cultural Competence, and Language Access Services: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/23498.
×
Page 72
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The aging and evolving racial and ethnic composition of the U.S. population has the United States in the midst of a profound demographic shift and health care organizations face many issues as they move to address and adapt to this change. In their drive to adequately serve increasingly diverse communities, health care organizations are searching for approaches that will enable them to provide information and service to all persons, regardless of age, race, cultural background, or language skills, in a manner that facilitates understanding and use of that information to make appropriate health decisions.

To better understand how the dynamic forces operating in health care today impact the delivery of services in a way that is health literate, culturally competent, and in an appropriate language for patients and their families, the National Academies of Sciences, Engineering, and Medicine conducted a public workshop on the integration of health literacy, cultural competency, and language access services. Participants discussed skills and competencies needed for effective health communication, including health literacy, cultural competency, and language access services; interventions and strategies for integration; and differing perspectives such as providers and systems, patients and families, communities, and payers. This report summarizes the presentations and discussions from the workshop.

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