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Suggested Citation:"5 Concluding Panel." Institute of Medicine. 2013. Organizational Change to Improve Health Literacy: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18378.
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5

Concluding Panel

SABRINA KURTZ-ROSSI, M.Ed.

Principal, Kurtz-Rossi and Associates

The following is a summary of the presentation given by Sabrina Kurtz-Rossi. It is not a transcript.

Kurtz-Rossi said she would be presenting her perspective on the workshop presentations. First, she said, the field has come a long way. Titles such as “director of health literacy,” “health literacy coordinator,” “director of education and health literacy,” and “senior health literacy specialist” did not exist a short time ago. Health literacy has become a respected field of study, with its own group of professionals, and that indicates how far the field has come. Yet, most people who work in health literacy have other credentials before they enter the field, and that, Kurtz-Rossi said, is significant.

A lot of new people are entering the field of health literacy, and those people really make a difference, Kurtz-Rossi said. Every speaker identified having the support of leadership as critical to moving an initiative forward. But the people who are passionate about health literacy work, who really believe in equity and making sure that people understand and are able to act on information for themselves, are who really make change happen. Kurtz-Rossi said that she believed that this was something that needs to be remembered in order to support those doing the work.

Suggested Citation:"5 Concluding Panel." Institute of Medicine. 2013. Organizational Change to Improve Health Literacy: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18378.
×

Another theme Kurtz-Rossi identified throughout the presentations was that people need health literacy tools to be successful. There are a number of tools out there—teach-back, confirming understanding, plain language, and now something new, HELPix. In addition, there is the Health Literacy Universal Precautions Toolkit from the Agency for Healthcare Research and Quality.

One thing Kurtz-Rossi said she did not hear about was any organized professional development for people in the field. There are a number of tools, but there needs to be a place to bring them together so that new people in the field know where to go to get them. Evaluation is another area in which health literacy professionals need more support. It is important to provide technical assistance, training, and resources for evaluation. It is important both to plan the evaluation while designing the program and then to actually conduct the evaluation. These are basic things, like measurable objectives and logic models. There is a strong and growing research base, which has helped develop the field, although there is still work to do.

Kurtz-Rossi said the health literacy field has to do a better job of engaging the community. Medical care cannot solve all health problems. Patients need to be educated, to be engaged in a dialogue, and to participate in decision making. Health literacy could use community partners that may or may not be health oriented, such as social service programs.

Related to that point is the issue of culture, literacy, and language, Kurtz-Rossi said. A number of speakers talked about how critical it is to link these elements. Health literacy work must pay attention to language issues and language access. This needs to be emphasized more and could be a topic for a future roundtable meeting. One component often missing in the training of health professionals is how to work with interpreters. Training interpreters in health literacy is important, but health professionals also need to be trained to work effectively with interpreters.

Technology was an issue mentioned by a number of speakers, Kurtz-Rossi said. Social media and new technologies might be approaches to use to increase information access and build health literacy skills in the community. Knowing how to access information, evaluate that information, and use that information to make decisions are real skills. If people don’t have those skills from the outset, they will not learn them during the patient-provider interaction. Working with the community might help with that.

Kurtz-Rossi said that the way in which the roundtable supports the development, growth, and sustainability of the field is key. For example, with regard to standards, how do people in the field know they are doing the right thing? The roundtable might be a leader in this discussion. There is also discussion in the field about establishing a health literacy associa-

Suggested Citation:"5 Concluding Panel." Institute of Medicine. 2013. Organizational Change to Improve Health Literacy: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18378.
×

tion, which, Kurtz-Rossi said, is needed for health literacy professionals to take themselves seriously as a profession.

Kurtz-Rossi also noted that everyone in the room was a health literacy expert with a lot of experience to pass on to new people coming into the field. That could be a role for a health literacy association—to mentor and pass on experience, she said.

RICARDO WRAY, Ph.D., M.S.

Associate Dean for Graduate Education and Research Saint Louis University

The following is a summary of the presentation given by Ricardo Wray. It is not a transcript.

Wray noted that the roundtable members, presenters, and participants were an early adopter group in health literacy. The challenge for this group is to codify and document successes. Some of the key lessons he learned from the presentations were the importance of

  • leadership,
  • integrating health literacy across systems and departments, and
  • using evidence both to begin a conversation about health literacy and then to maintain efforts in health literacy.

Wray said that a common theme of the presentations was that the policies coming out of The Joint Commission and health care reform serve as an impetus for organizations to move forward with health literacy efforts. Rather than hindering efforts, these policies are helping move the conversation forward. Another common theme, he said, is that the habit of looking for best practices and standards is an attribute or characteristic of an organization that has success in sustaining and maintaining these efforts.

Cost is a common concern for administrators and leadership, who ask, “Will the program cost money?” Wray said he thought there was a lot of good material at the granular or tactical level, such as creative strategies that people employed to keep their efforts from becoming too expensive for their organizations. For example, rather than spending $4 million to train all of the nurses in the Carolinas HealthCare System, the health literacy team spent much less creating the materials and disseminating them. They spread the effort through the organization using an on-the-job training modality. Many others used community partners and volunteers as a resource, Wray said.

Suggested Citation:"5 Concluding Panel." Institute of Medicine. 2013. Organizational Change to Improve Health Literacy: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18378.
×

Wray noted that another critical factor is having a team approach across departments and using a multipronged approach, which are also strategies identified to gain the support of physicians. If the patients are engaged and acting on their knowledge and if the support systems are in place, then, before long, the doctors will join in because it becomes a matter of course. Culture and leadership also are important, he said.

Wray said that he found it interesting that most of the speakers were from large health systems. One of the questions is how to replicate these efforts in smaller, independent organizations.

For research and evaluation, evidence is important, and a number of metrics were identified, Wray said. He hoped that these could be codified to develop common, validated methods of study design and metrics for measurement that are appropriate. This is also a time to begin to think about conceptual frameworks, said Wray. A number of theoretical and conceptual approaches are very consistent and align with these efforts. Some of these approaches were mentioned by the speakers—quality improvement, organizational behavior and change, and diffusion of innovations—and the extent to which this thinking is integrated into health literacy efforts is important. Wray said that he thinks this effort of establishing conceptual frameworks for health literacy is in the early stages, but it is progressing.

Evidence is also important to dissemination and implementation. In thinking of ways to make programs easy for organizations to adopt, the nature of the evidence has to be considered in terms of what is appropriate and acceptable for different audiences. For example, in smaller organizations, there might not be the expertise or the resources to conduct randomized controlled trials, but there might more pragmatic study designs that are appropriate. Wray said that the organizations he has worked with have designed their own studies for their own contexts.

Implementation science is also a key framework for health literacy programs, Wray said. Implementing health literacy programs is often more adaptation than adoption. Each organization must identify key ingredients of the interventions that can serve its needs. Strategies for marketing and distributing knowledge, tools, and resources are going to be important areas of work. A number of speakers had introduced resources that they have made available to the public. It is a challenge to provide standardized education materials because an item will not work for all populations, he said. However, if the health literacy community can identify some strategies for sharing the resources, starting with the resources that are available across the organizations represented at the workshop, then that is a good starting point. It is important to make sure that the materials that are shared emphasize the system’s sensibility.

Wray noted that the attributes that seemed to be discussed less over

Suggested Citation:"5 Concluding Panel." Institute of Medicine. 2013. Organizational Change to Improve Health Literacy: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18378.
×

the course of the day were the fourth attribute (includes populations served in the design, implementation, and evaluation of health information and services), the fifth attribute (meets needs of populations with a range of health literacy skills while avoiding stigmatization), the seventh attribute (provides easy access to health information and services and navigation assistance), and the tenth attribute (communicates clearly what health plans cover and what individuals will have to pay for services).

Wray concluded his remarks by asking which of the attributes of a health literate organization should come first. Are there foundational attributes that set the stage for the others? Over the course of the presentations, it seemed that leadership and training may fill the role of foundational attributes, he said.

DISCUSSION

George Isham, M.D. Chair, Roundtable on Health Literacy Moderator

Isham called on former roundtable member Sharon Barrett to start the discussion. Barrett said that as a founding member of the roundtable, she has seen health literacy grow and spread over the years as resistance to implementing health literacy interventions decreases. As she listened to the presentations, she wondered, what got each of these people interested in health literacy? Was it the growing number of publications. Is it the information coming from the roundtable? What, she asked, engaged the presenters?

Bauer said he supported his grandparents as they aged and saw the need for clear communication and partnering, so he became an advocate, and this is his passion.

Rogers said seeing patients readmitted time and again to the hospital because they didn’t understand how to take care of themselves motivated her.

Riffenburgh said she was working in adult basic education and special education. But when she had to begin taking care of her father, who had leukemia, and her mother, who had dyslexia, she realized there was a mismatch between what they could understand and what she could.

McCandless said she had to complete a maintenance-of-certification module in order to stay board-certified for internal medicine, and she found health literacy.

Parnell said a major component of her nursing training was patient education and health literacy (although she didn’t have a name for it then), and it has been a labor of love ever since.

Suggested Citation:"5 Concluding Panel." Institute of Medicine. 2013. Organizational Change to Improve Health Literacy: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18378.
×

Komondor said she also did not know what it was called, but her passion came from years in nursing and personal experiences with siblings with chronic illnesses, trying to interpret what was going on. But the American Medical Association (AMA) videos were the igniting force when she realized the depth of the struggle that some people have.

Yin said her interest began when she realized how often patients were confused about what was happening. Then she met and heard health literacy champions—Benard Dreyer, Linda van Schaick, Ruth Parker, and Rima Rudd—and they inspired her to get into the field.

Izquierdo-Hernandez said that she came to health literacy through working with the community over many years, which increased her understanding of the value of formalizing performance improvement within an organization.

Hall said personal experience brought her to health literacy, although, like many others, she did not have a name for it. She worked with parents who were grieving over the loss of a normal pregnancy. In an attempt to try to meet them where they were, she would try to help them understand what was going on with the complicated situation of monitors and ventilators and IVs and noises. The AMA videos were the final motivating factor.

Abrams said what motivated her was finding a name for something that was of lifelong interest, hearing a couple of key people eloquently describe the importance of health literacy, having tools available, and getting to hear the eloquent voices of new readers and adult learners who put a real face on the issue.

Noonan said she came to health literacy because she was tapped by a senior leader to lead health literacy, about which she knew nothing, from a quality perspective. But as she dived into the content, she quickly became a zealot, she said, thanks to Cindy Brach and Darren DeWalt.

A meeting participant said that as an immigrant she experienced communication barriers, difficulties accessing care, and trouble understanding health information given to her. Health literacy empowered her, she said. Now she wants to be a health literacy champion, teaching providers what patients go through and helping patients become their own advocates.

Wray said he heard that the passion for health literacy comes from personal experience, particularly for the clinicians in the room. For himself, Wray said, he comes from the field of communications, so it is all about health communication to him.

Kurtz-Rossi said that a focus on adult learners and adult literacy brought her to the field—working with adult learners who talked about their struggles.

Scott Ratzan, roundtable member, said he entered the field when he first worked with Ruth Parker to define health literacy for a National Library of Medicine bibliography.

Suggested Citation:"5 Concluding Panel." Institute of Medicine. 2013. Organizational Change to Improve Health Literacy: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18378.
×

Cindy Brach, roundtable member, said she thinks measurement is another theme heard throughout the day, that is, measurement for quality improvement, for marshaling support, and for performance rewards or saving. Perhaps it is time to focus more effort on health literacy measurement, she said.

Rima Rudd, roundtable member, observed that early measurement in health literacy focused on attributes of the patient, that is, ability to read, to comprehend, to recognize words, to read instructions, and to deal with numbers. Nothing had been said about measures of a health care professional’s ability to present information in a clear, logical order without jargon, she said. Why is it that discussion of measures of professionals has focused on whether they use specific health literacy tools? There are measures of systems, but missing are measures of how well those in the health care and public health systems communicate, she said.

Andrew Pleasant, roundtable member, said that a common and validated measure of health literacy is needed. Tools do exist to evaluate the health literacy skills of the medical team, he said, and many different tools are used to evaluate patient health literacy skills. But there is no single agreed-upon tool in either case. Only one of the definitions of health literacy explicitly states that it is not only the patient’s problem but also the health care professionals’ problem, and that is the Calgary Charter on Health Literacy.1 But now is the critical time to examine where we are in health literacy and where we need to go, he said. One way to do that would be to revisit the 2004 Institute of Medicine (IOM) report Health Literacy: A Prescription to End Confusion. The opportunity to advance health literacy has never been more embedded into the regulatory structure of the United States, he said, and now is the time to act.

Linda Harris, roundtable member, said that in terms of health literacy measurement, when she thinks of a unit of analysis, it is either the patient or the provider. One of the things that is appealing about the chronic care model is the emphasis on productive interaction, which is about whether two people together produce a positive outcome. Perhaps productive interaction can be measured through teach-back, which invites feedback as its fundamental element. In the giving and requesting of feedback, there is real conversation. If patients and clinicians can have conversations where there is reciprocation of feedback, each has the opportunity to adjust to the other. If that could be evaluated, she said, it could move the field forward. It also has implications for training, she said. How does one train somebody to engage in that kind of conversation?

_______________

1 The Calgary Charter is a document that identifies core principles for developing health literacy curricula. See http://www.centreforliteracy.qc.ca/sites/default/files/CFL_Calgary_Charter_2011.pdf (accessed June 21, 2013).

Suggested Citation:"5 Concluding Panel." Institute of Medicine. 2013. Organizational Change to Improve Health Literacy: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18378.
×

Wray said he thinks it is important to identify strategies for measuring provider communication skills. If health professionals are trained in health literacy skills while they are in school, then that would also be a good place to develop evaluation measures.

Alice Horowitz, University of Maryland, College Park, said that placing health literacy on board examinations, whether national, state, or regional, is a major incentive to teach health literacy in health professional schools. She urged people to focus effort on doing this.

Will Ross, roundtable member, said that medical students in his school must complete a clinical skills examination that assesses their ability to communicate effectively. And this idea is spreading to other schools. What is missing in the field are trained and certified health literacy experts. We need experts who understand the literature and can monitor the training of other health care professionals, he said.

Kurtz-Rossi said that Cliff Coleman from Oregon Health and Science University has begun to develop some health literacy competencies for health care professionals, but noted that it is true that we have not yet identified what the competencies are for those communicating information.

Patrick McGarry, roundtable member, suggested that motivational interviewing could be a key communication tool.

Horowitz pointed out that neither oral health nor dentistry was mentioned during the meeting, although the conference organizers tried to find a dental health literacy implementer to speak. Yet, oral health is of prime importance, she said. Beyond that, however, Horowitz said, she thinks it may be time for another crosscutting, state-of-the art IOM consensus report on health literacy. It has been 10 years since the first report, and much has changed, she said.

Benard Dreyer, roundtable member, said he identified four major themes throughout the presentations. First, organizations that are successful at implementing health literacy have a person whose job is to move health literacy forward and whose title reflects that. Yet, health literacy also needs to be integrated into safety, quality, regulation, value purchasing, and so on for it to be sustainable. Second is the need for supportive and engaged leadership even if competing priorities sometimes result in fewer resources than necessary to mount a successful health literacy effort. Third is the bidirectional relationship of health literacy and limited-English-proficiency efforts—each needs to inform the other. Finally, there is a need for general processes and tools that can be used anywhere, but also needed is the opportunity to tailor these processes and tools to particular settings, Dreyer said.

Kurtz-Rossi said that the majority of those who work in health literacy come from a number of different fields—nursing, dentistry, physical

Suggested Citation:"5 Concluding Panel." Institute of Medicine. 2013. Organizational Change to Improve Health Literacy: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18378.
×

therapy, and education, for example. It is important to be as inclusive as possible as the field of health literacy moves forward, she said. In terms of measurement, there is a lot to be learned from the literacy field. Finally, there are a number of best practices out there that are not research based. There needs to be a place to house those practices so that people have easier access. It also would be great to have a health literacy research journal, she said.

Wray said that one thing that struck him is that the successes described by the presenters took years to develop. Many had been on the job for a decade or more. Yet, it is still not clear how to begin efforts in an organization that does not recognize the importance of health literacy, and work is needed on this question, he said.

Isham said that broad social changes take time and that the momentum for health literacy is growing. In terms of organizational change, one might learn from models in the health care quality improvement field.

Ratzan said he agreed with earlier statements that it is important to include health literacy in board-certification examinations because that will be an incentive to learn. We also need tools, including health literacy tools, for mobile health, he said. Another area of need is how to sustain advocacy for health literacy, not only at the local level but also nationally and internationally, with corporations and governments. We need to look for new ways to incorporate health literacy in public health and medical institutions. We need to work together in partnerships to advocate, develop competencies, develop population measures, and figure out how to sustain and expand health literacy efforts, he said.

Darren DeWalt, roundtable member, said that the spread of innovation is facilitated by an innovation’s adaptability and ease and simplicity of use. Several speakers said they took concepts from health literacy and boiled them down to simple things they could use. Several people said they focused on Ask Me 3 and teach-back, yet there are many tools for health literacy, and it is important to remember that, DeWalt said. Feedback on the Health Literacy Universal Precautions Toolkit is that it is too lengthy and complicated. But health literacy groups should choose items from the toolkit that work for each situation. One does not need to use the entire kit, he said.

Steven Rush, roundtable member, pointed out that organizational change in an organization with more than 100,000 employees is difficult. Rush said he was impressed by successful efforts to reduce the reading grade level of materials, but it is important to note that, by itself, materials written at a lower level are not necessarily health-literate materials. Another important point, he said, is the idea that health literacy is related to social justice and to the social determinants of health. There are millions of people who will soon have access to medical care under the provisions

Suggested Citation:"5 Concluding Panel." Institute of Medicine. 2013. Organizational Change to Improve Health Literacy: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18378.
×

of the Patient Protection and Affordable Care Act. Many will not have any idea how to access and use health care, he said. This is a major opportunity to demonstrate health literacy’s importance. Finally, in the spirit of sharing health literacy tools, Rush said that UnitedHealth Group has created a plain-language English-Spanish glossary of more than 1,600 health and health insurance terms, including dental health, which everyone is welcome to use.

Lori Hall, roundtable member and speaker, said that she often gets inspiration for health literacy efforts from outside the field. For example, she recently watched a TED Talks2 episode about the golden circle, that is, about what differentiates successful efforts from less successful ones. Successful efforts focus on why the effort is important. That is what she is trying to communicate in her organization—why health literacy is important. Similarly, an article she read about shared values described how businesses come together with academia and communities to solve social issues. This may be something that health literacy needs to focus on, she said. When she talks with her corporation’s senior leaders, the focus is on corporate responsibility. Only after having that conversation is health literacy woven in, she said.

Laurie Francis, roundtable member, said health literacy is part of patient-centered care and communication. The patient-centered health home approach is growing in community health centers around the country. With the implementation of the Affordable Care Act, these centers can expect to serve millions more people who will be able to get health insurance and access to care, she said. But health literacy is not fully embedded in those centers even though there is some good work under way on patient-centered communication. She said she agrees with Rush that health literacy is connected to social justice and social determinants and that this should be an area of focus.

Wilma Alvarado-Little, roundtable member, said that it is important to think about teaching health literacy early in schools.

Kurtz-Rossi said she would emphasize the attribute of preparing the workforce and think about the characteristics of a learning organization. A learning organization changes on the basis of its people, and changing the way people view and engage in health literacy changes the organization. Ratzan was correct, she said, when he spoke of the importance of advocacy. Currently, no organization is an advocate for health literacy, but that could be an important role for a health literacy association, she said.

Isham said that as he listened to the presentations about successful implementation of the attributes of a health literate organization,

_______________

2 Ted Talks are conferences on different topics that are available for free online viewing at www.ted.com.

Suggested Citation:"5 Concluding Panel." Institute of Medicine. 2013. Organizational Change to Improve Health Literacy: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18378.
×

he began thinking about systems theory and adaptive systems and the rules that promote change. He asked Wray to comment about the character of changes, that is, about driving change in the system that would lead to more effective provision of information to low-literacy populations. To what extent do systems theory and complex adaptive systems inform us about the kinds of things that would be useful at a national level or to an industry, as opposed to things that might not be as helpful?

Wray said that what comes to mind are earlier comments about how the policy environment has simplified the impetus for organizations to engage in this kind of work. The benefit of the roundtable, he said, is that it includes representatives from private-sector companies, from the insurance industry, from education, from health care organizations, and from academia. There can be conversations about the extent to which intersectoral system demands can be synchronized. Such conversations could, he said, find areas where there is agreement. Wray said that Ruth Parker made a presentation in which she said that health literacy is a “primer coat” in that it is essential to quality of care, patient safety, and patient-centered care, but it is not the whole thing. Much of the resistance from administrators is that they think health literacy is elective, that it is gilding. But if the system can establish health literacy as an essential part of the health care system, that is a major step, Wray said.

It is fascinating, Wray said, that the field has transformed and changed from one that focused initially on serving individuals with low literacy to one in which the emphasis is on system demands. An article by Koh and colleagues (2013) in Health Affairs said that if 88 percent of people are not proficient in health literacy, then people are not the problem, the problem is the system.

Isham concluded the workshop by once again thanking all presenters for their stimulating and fascinating presentations and everyone for their active participation in discussion sessions.

REFERENCE

Koh, H. K., C. Brach, L. M. Harris, and M. L. Parchman. 2013. A proposed “health literate care model” would constitute a systems approach to improving patients’ engagement in care. Health Affairs 32(2):357-367.

Suggested Citation:"5 Concluding Panel." Institute of Medicine. 2013. Organizational Change to Improve Health Literacy: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18378.
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Organizational Change to Improve Health Literacy is the summary of a workshop convened in April 2013 by the Institute of Medicine Board on Population Health and Public Health Practice Roundtable on Health Literacy. As a follow up to the 2012 discussion paper Ten Attributes of a Health Literate Health Care Organization, participants met to examine what is known about implementation of the attributes of a health literate health care organization and to create a network of health literacy implementers who can share information about health literacy innovations and problem solving. This report discusses implementation approaches and shares tools that could be used in implementing specific literacy strategies.

Although health literacy is commonly defined as an individual trait, there is a growing appreciation that health literacy does not depend on the skills of individuals alone. Health literacy is the product of the interaction between individuals' capacities and the health literacy-related demands and complexities of the health care system. System changes are needed to better align health care demands with the public's skills and abilities. Organizational Change to Improve Health Literacy focuses on changes that could be made to achieve this goal.

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