7

Reflections on the Day¹

As is traditional for Roundtable on Health Literacy workshops, the final session gave the roundtable members the opportunity to provide their reflections on the day. Michael Villaire from the Institute for Healthcare Advancement started by noting that the discussions at this workshop highlighted one of the “more knotty, visceral, and present issues in health literacy,” which is health insurance literacy and the challenge of navigating the health care system. While challenging, this workshop showed that the solutions to this problem, other than simplifying the system, lie within the community of organizations that are working with navigators and that are on the ground interacting with consumers. Noting that there was a comment during the workshop about the need to follow up with people after they have been enrolled, Villaire said taking that step is critical. “We have been advocating that for years. We have developed programs and tools for that, but I think that is where the emphasis needs to be,” said Villaire. He also called for providing rewards or incentives to the navigators and assisters who do reach out to their clients after enrollment.

Marin Allen said she was impressed with the just-in-time approach to providing information that Cara James mentioned and said that approach reminded her of communication work from James McCroskey at the University of Alabama at Birmingham that could inform selection apportionment and the arrangement of materials in an assister’s script, for example.

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¹ This section is based on the comments by the members of the Roundtable on Health Literacy who attended the workshop, and the statements have not been endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.

The natural tendency, said Allen, is to “put things in the order that we think they need to be in, but we need to figure out what to put at the top and a series of the right questions.” These questions, such as “Are you regularly employed or a seasonal worker?” and “Do you have any major debts?” will help provide an understanding of where someone is in their lives and enable the assister to provide better advice. She also stressed the need for transparency in the data provided to the marketplaces and assisters.

Steven Rush noted he looks at health insurance literacy as being at the intersection of health literacy and financial literacy, both of which are complex. He listed two concepts that will now inform the work he does at his organization. The first is that health insurance literacy and using health care are learned behaviors. “That is very powerful for me when looking at how an organization creates services and programs,” said Rush, who added that it raises a number of important questions about how understandable and usable information is to the consumer and how much cognitive burden is placed on the consumer. The other concept was one that Catina O’Leary mentioned: What are the skills and issues needed to keep and to use insurance? In his opinion, those two questions provide a great framework for working with those individuals in his organization who are communicating with consumers and members and creating products and services for them.

Rima Rudd from the Harvard School of Public Health commented that she was both impressed and buoyed by what she felt is a sincere focus on assistance with dignity and clarity, through trust and transparency, and a sincere effort to remove barriers. She also noted that some of the techniques presented at the workshop are old and well-known and based on the rigor of formative research and task analysis, all of which she said is good and important but still working its way downstream. Rudd then said that, while one part of her felt like celebrating the fact that so many of the presentations were about carefully piloted programs and the formative research behind those programs, another part felt that these programs should represent the everyday approach to addressing the problems consumers face in trying to understand and use their insurance. “It seems to be that we are taking for granted the almost absurd tools we are offering people and the outrageous expectations we have that people are going to carry through with these arduous tasks,” said Rudd. In a way, this situation reminds her of a mechanic being charged with working a machine that constantly needs fixing and explaining rather than throwing out that machine and designing one that works correctly as the default state, not the exception. Rather than constantly fixing what is a broken system and going to great lengths to teach people how to use this flawed system, the system needs to be changed and replaced with something that works better.

Earnestine Willis also said she was invigorated by the day’s discussions and that it is important to acknowledge that, despite the flaws in the sys-

tem, there are many more people who have health insurance today and that people are working to improve the customer experience and are making progress. Still, she said, there are great needs and it is important to continue having the discussion on how to create a system that is absolutely based on consumer satisfaction rather than one based on and driven by money and cost. Willis said more knowledge is needed about health literacy and health insurance literacy as they relate to the life course and the changing insurance needs, starting with the Children’s Health Insurance Program and ending with Medicare. She commented on the demands placed on the navigators to understand this breadth of products and then be able to explain them to consumers, and concluded that everyone involved in this system—the institutions, the plans, the providers, and the end users—have to change and take true ownership of the process.

Terry Davis said the main themes of the day for her were that trusted personal health care will continue to be essential for many consumers, the reality of the boomerang effect and that situations change, and that a one-size-fits-all approach will probably not work. She then put the day’s discussions in context. “As a country, we are all learning more about health insurance, and I see this as a part of the dynamic changes going on in health care,” said Davis. To her, health insurance is part of the world of cultural changes that society is going through as it moves from an agrarian to an industrial, to an information technology–driven global society. She also commented that, while everybody talks about the cost of insurance, nobody talks about the cost of care because there is no transparency.

Suzanne Bakken from Columbia University said from her perspective as an informatician the discussions got her thinking about ways of decreasing task complexity, not only in terms of what consumers have to comprehend and do but also in terms of the types of tools needed for the assisters. “I think task complexity needs to be decreased on both ends,” said Bakken.

Alicia Fernandez remarked, that while she learned a great deal at the workshop, there are many aspects of the insurance system she does not understand. For example, she does not understand why an insurer would want to offer 26 different plans. “I do not understand the market logic of that,” said Fernandez. “I do not understand why that is not at some point self-defeating. I wish I could understand that better because that is clearly part of the problem.” She also said she would like more data on the characteristics of those who are still uninsured. For example, she would like to know if it is true that among the uninsured Latino population some 80 percent are of limited English proficiency. Fernandez also said she sees the need to provide ongoing assisters for the highly vulnerable, something she does not believe will happen, and to push for a more health literate insurance system using the best practices discussed at this workshop, such as standardized plans and Consumer Reports–type nudges. “The high degree

of variability among the states in terms of what they are allowed to do and then what they have chosen to do would allow for a synthesis of those [best practices],” said Fernandez. She suggested there was a need to push for more research to investigate what would happen if the enrollment deadline was changed to coincide with the April 15 federal income tax deadline. Also research is important to determine the impact of high-deductible insurance plans and physician transparency on the choice of drugs, Fernandez said. On a closing note, she said that as a member of the board of governors for the Patient-Centered Outcomes Research Institute, she found the day’s discussions “extraordinarily simulating in terms of the type of research that can and should be done.”

Jay Duhig thought that the recent discussion paper² on the considerations for a new definition of health literacy and working through the different components outlined in that paper—the multidimensionality, a focus on system demands and outcomes, the potential for change, and informed decision and action—encompass what was discussed at this workshop and provide a path to develop solutions. “My hope is that conceptualization will continue to gain traction so that stakeholders throughout the process will understand that these problems are not intractable and that there are things we can do to continue to get better,” said Duhig. He also noted the importance of investing in the assisters and navigators who are adrift in many ways because of where they sit in the health insurance and health care enterprise, and he complimented O’Leary for putting the health insurance literacy problem into three words: get, keep, and use.

“I am going to talk about the day in somewhat different terms,” said Cindy Brach. “I saw this as a clash of different values.” On one hand, she said, there is the cherished value of choice and the free market. Referring to Fernandez’s question as to why an insurer would offer 26 plans, she said that people want different things and they should be able to choose. “We are very hesitant to infringe on that,” said Brach. On the other hand, she said she heard a plea in the discussions for simplification as well as some paternalism in terms of pointing consumers in the right direction. “There is this tension, and to me, the navigators are trying to mediate that tension,” said Brach. She then remarked that she agrees with Rudd that the system needs redesigning rather than continuing to do little things to make it more manageable.

Another point Brach raised was that in addition to insurance navigators there are other kinds of navigators in the health care system, including cancer care navigators and community health workers who essentially serve as navigators for various communities. “I think there is a real danger that

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² See https://nam.edu/considerations-for-a-new-definition-of-health-literacy (accessed January 31, 2017).

these people, who I heard today are playing a much larger role of navigation than just in the enrollment process, might go away once we get a little further in terms of our goals for enrollment.” She also said she was concerned about what would happen to those who will never be enrolled, such as undocumented immigrants. Her final comment, addressing Fernandez’s interest in the uninsured who are of low English proficiency, was that the Agency for Healthcare Research and Quality funded research by Glenn Flores at Medica Research Institute showing that when Spanish speakers were provided with bilingual care workers they were more likely to maintain their health insurance.

Catina O’Leary commented how valuable it was for her, as someone who is immersed in insurance work at Health Literacy Missouri, to hear what others who are not so involved in this area have to say. She also noted that the main points across all of the presentations and discussions have been consistent: the need for navigators and assisters to talk directly to people, to find out what consumers want and what their values are. She found it reassuring that everyone at the workshop seems to have the same understanding of the problems and the solutions to those problems.

Michael Paasche-Orlow said he was struck by the fact that the health insurance system is essentially an extension of the health care system but one in which those charged with dealing with the consumers of that system are not given the necessary tools and training. He said it feels cynical to create the resources needed by consumers, and as meager as those resources are to take them away once someone is enrolled in the system. He also commented that he has seen some navigator systems set up to eliminate union jobs and lower costs as a way of undermining the field of social work. His final comment was that redesigning the system for success will require a big effort to not only bring people in but to support the cultural transformation that it takes to use insurance in a pro-health manner.

Winston Wong said that he believes the passage of the ACA was a step forward for health literacy and that the challenges facing the 20 million Americans who are now insured to understand and use their health insurance shows the importance of health literacy. He also remarked that the ACA exemplifies the value America now embraces, which is not that health care is a right but that purchasing health care is a right, which is a big difference. The discussions at the workshop, he said, show the impact of health literacy on the transactional issues regarding getting people enrolled in a plan and then using and leveraging that coverage to improve health care. Another issue that was touched on, he said, was that health literacy is part of a population-based approach to health care coverage in that communities need to understand that they have the right, and perhaps even the obligation, to be insured and what it means then to be covered under a health insurance plan. “That is a population-based question, not a trans-

actional question,” said Wong. “It is a political question.” In that respect, navigators are so intriguing to Wong because they bridge the transactional and the political with regard to health literacy.

Terri Ann Parnell from Health Literacy Partners said the themes she heard over the course of the day had to do with the importance of community, partnerships, respect, trust, meeting people where they are at, and providing what they need at the right time. “That requires a hybrid approach with multiple touches,” said Parnell. The main concept she heard was about the connection between coverage and care and the need to continue reaching out to consumers once they have been enrolled. She said she struggles with the idea of nudges. “I think done well and done correctly, nudges have proven to be very successful and positive, but I think we need to be very cautious about how we nudge people because those decisions are very personal and value-based,” said Parnell. “I think there could be bias there.”

Kim Parson agreed that the nudges make her uncomfortable as does the idea of limiting choice. She thought the best part of the day was hearing the examples of best practices and the discussion of consumer-centered design and the importance of involving the consumer at the center of all of these efforts. She also noted that all of the challenges around health insurance literacy that were discussed over the course of the day are not new, and they exist for everyone who has health insurance. “Insurance is complicated because health care is complicated,” said Parson.

MaryLynn Ostrowski pointed out that many of the complications having to do with transparency arise from the way health plans contract for services with providers and institutions and the need to understand revenue codes and diagnostic codes. “If we could simplify the contracting process, it would make transparency a much easier goal that we could actually achieve,” said Ostrowski. She also noted the health plans were missing from the day’s discussions and that health plans hear about these problems every day from their members and have an appetite for finding solutions to these problems. Another voice missing at the workshop was that of the community. “When we look at the community, health is so much more than health care and health starts at home,” said Ostrowski. “Health is localized for people, and it is the social determinants of health that are driving poor health outcomes. When we are talking about prevention, we need to move into the communities and we need to talk about and look at the environmental, social, financial, and economic factors, and at transportation, affordable housing, access to living wage, and access to fresh fruits and vegetables. It needs to start there.” As a final comment, she wondered if health literacy should become part of the U.S. educational system.

Linda Harris from HHS said the focus on user-centered design might provide a broader approach to the problem than just considering it through the lens of health literacy. “The notion of understanding better about how

health literacy and user-centered design work together to accomplish some of the things that we want to accomplish was encouraging to me,” said Harris, who hoped there would be more engagement with the user-centered design community. She suggested that the universal design approach was akin to the universal precautions approach to health literacy, and she wondered if a good test of the universal design approach would be to see how it helps engage the remaining 30 million uninsured individuals.

Jennifer Dillaha said the message that she heard clearly throughout the day was the importance of caring whether people really understand health insurance. “All of the assisters and other things would not have been invented if we did not care whether people understood,” she said. Taking a broader view, she said it seems that both health care and health insurance struggle to get to those who do not understand and added that many people, including policy makers, do not realize how many people do not understand health insurance and health care. “We will not have a successful health system unless all of us truly care that people understand and we make that part of the measure of what we do to look at success and quality,” said Dillaha.

Lindsey Robinson said that another voice missing from the discussions was someone who could talk about the issues involving dental insurance. As she noted earlier in the day, pediatric dental health insurance is mandated in the ACA, though adult dental health was not included. Part of the blame for that rests with the dental profession’s reluctance to embrace a greater role in the health care system, though she believes the profession is getting past that reluctance. Early-career dentists, she said, are now used to working as a health care partner in a multidisciplinary team environment.

She then addressed the issue of affordability. Covered California, she said, had just released its new rates, and the premiums for health insurance were set to rise an average of 13 percent. Given that almost half of the remaining uninsured have family incomes lower than 200 percent of the federal poverty level, it is no surprise that they remain uninsured because of affordability. “This is something we are going to have to grapple with in the future,” said Robinson.

Ruth Parker said there are still gaps in some of the essential information needed to make an informed choice. These gaps center around transparency of quality data on performance and cost. “Until we have reliable data that are transparent about quality performance and cost and we make those a part of everyday tools that people have for making informed choices, we are going to keep coming up short,” said Parker. “I cannot help but think that there are just too many secrets.”

Stacey Rosen from Hofstra Northwell School of Medicine thought the concept of health insurance being a learned concept was important. She noted how proud she was of the health literacy community for tackling the

need to form trusted relations with people to get them enrolled in health insurance, but then she also realized what an utter mess the system is because of complexity and a lack of transparency. She voiced her frustration as a health care provider that she cannot have the right conversations with her clients about health insurance and how that inability does not reflect the way the care community has been approaching health literacy over the past 15 years to turn the interaction between physician and patient into a bidirectional one. In her opinion, “We need to evolve today’s discussion to make it an expected competency of the deliverers of care,” said Rosen. She pointed out how her field, cardiology, has done a good job developing treatment guidelines, best practices, appropriateness criteria, and even cost-effectiveness criteria when possible, but when a patient asks her how much a nuclear stress test costs, she is completely unable to answer that question. “As we fix this mess of a system, we need to make it an expectation that the deliverers of care will be involved,” said Rosen. “We will be expected to be educated, and it will be a competency in medical schools and allied health professions.”

Providing the last comment of the day, Bernard Rosof first complimented the roundtable members for agreeing to disagree on some issues and then developing solutions that were productive for the day’s activities. Then, as a means of framing the day’s discussions, he referred to the triple aim of providing better care, improving the health of the community and the population, and making care affordable and said that these three goal cannot be achieved without the innovative solutions described at this workshop that embed health literacy and the element of trust. “That overarching thought is something that we can put as a theme for what we heard today, where the focus of all the activity is on the patient, consumer satisfaction, and the community.” With that remark, Rosof adjourned the workshop.