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Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop—in Brief (2016)

Chapter: Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshopin Brief

Suggested Citation:"Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshopin Brief." National Academies of Sciences, Engineering, and Medicine. 2016. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop—in Brief. Washington, DC: The National Academies Press. doi: 10.17226/24613.
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Suggested Citation:"Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshopin Brief." National Academies of Sciences, Engineering, and Medicine. 2016. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop—in Brief. Washington, DC: The National Academies Press. doi: 10.17226/24613.
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Suggested Citation:"Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshopin Brief." National Academies of Sciences, Engineering, and Medicine. 2016. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop—in Brief. Washington, DC: The National Academies Press. doi: 10.17226/24613.
×
Page 3
Suggested Citation:"Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshopin Brief." National Academies of Sciences, Engineering, and Medicine. 2016. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop—in Brief. Washington, DC: The National Academies Press. doi: 10.17226/24613.
×
Page 4
Suggested Citation:"Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshopin Brief." National Academies of Sciences, Engineering, and Medicine. 2016. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop—in Brief. Washington, DC: The National Academies Press. doi: 10.17226/24613.
×
Page 5
Suggested Citation:"Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshopin Brief." National Academies of Sciences, Engineering, and Medicine. 2016. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop—in Brief. Washington, DC: The National Academies Press. doi: 10.17226/24613.
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Proceedings of a Workshop IN BRIEF December 2016 Health Insurance and Insights from Health Literacy: Helping Consumers Understand Proceedings of a Workshop—in Brief On July 21, 2016, the Roundtable on Health Literacy of the National Academies of Sciences, Engineering, and Medicine convened a workshop on health literacy and health insurance literacy in the context of health reform in the United States. The workshop was the most recent health reform–related activity of the roundtable, noted Bernard Rosof of the Quality in HealthCare Advisory Group, in his opening remarks. Since 2010, the year the Patient Protection and Afford- able Care Act (ACA) became law, the roundtable has convened two workshops related to this topic as well as commis- sioned two papers, and several members have prepared individually written perspectives.1 The roundtable’s attention to the topic of health insurance is appropriate because health reform has created major changes in the health care sys- tem in this country, said Rosof. It has brought millions of people into the system that previously did not have access. In addition, Rosof noted, many of these individuals have limited experience with health care and health insurance and are from populations that traditionally have high rates of low health literacy. The workshop focused on the challenges and opportunities in helping consumers obtain, understand, and use health insurance. The day’s workshop was organized around presentations and panel discussions that highlighted health-literate approaches to helping consumers. LESSONS FROM 3 YEARS OF EXPERIENCE The workshop began with an overview of the lessons learned from the implementation efforts of the past 3 years. Karen Pollitz of the Kaiser Family Foundation (KFF) said that from experience gained from the implementation of health reform so far, she sees three health literacy challenges. The first is people’s ability to determine their coverage eligibility and navigate the enrollment system. Second, is the broad choice of plans and people’s ability to compare insurance plans and coverage. Finally, according to Pollitz, once people are enrolled, it is a challenge for them to use their cover- age to connect to the care they need. Pollitz referenced a report from the Urban Institute that estimated that many of the almost 33 million people who remain uninsured are eligible for coverage.2 She said these high numbers indicate that the system is complex and that people need help figuring out their eligibility. Pollitz said that the KFF monthly tracking polling found that public awareness of the details of the ACA remains low and that people are not aware of the rules or timing of open 1 For more information on the Roundtable on Health Literacy’s work on health reform, see nationalacademies.org/ healthliteracyRT. 2 The report can be found at http://www.urban.org/sites/default/files/alfresco/publication-pdfs/2000691-Who-Are- The-Remaining-Uninsured-And-What-Do-Their-Characteristics-Tell-Us-About_How-To_Reach_Them.pdf (accessed September 8, 2016).

enrollment periods. For Pollitz, these findings highlight the need for in-person assistance. People need information in an understandable language, she said, but they also “need to sit down with an expert who can hold their hand and walk [them] through this process.” She noted that even after 3 years, it takes an experienced navigator an average of 90 minutes to guide a person through the process of determining eligibility and enrollment. Pollitz also remarked that it is well documented that many people do not understand health insurance in gen- eral, and this makes choosing a plan very difficult. KFF polls have found that although people generally understand common health insurance terms, many people struggle with the math involved to calculate out-of-pocket costs. Un- derstanding health insurance is critical to choosing a plan, said Pollitz, because there are so many choices and because the differences between plans can be highly nuanced. Understanding the details is also a key factor in using health insurance once a person is enrolled in a plan. Surveys have shown that people are dissatisfied with the plans they have, said Pollitz, perhaps in part because they did not fully understand how the plan worked when they signed up. This problem is especially acute for those with high care utilization rates, noted Pollitz. She concluded by saying that the system is complicated from beginning to end and that anything that can be done to make it simpler to access, select, and use insurance would be an important public service. CHALLENGES IN HELPING THE UNINSURED GET AND USE HEALTH INSURANCE Terry Davis from Louisiana State University moderated a panel discussion on health insurance enrollment from three different perspectives. The panelists were Elisabeth Benjamin from the Community Service Society of New York in New York, New York; Jannette Robinson Flint from Black Women for Wellness in Los Angeles, California; and Janet Mentesane from the Martin Luther King Health Center in Shreveport, Louisiana. The three panelists offered their experiences in leading outreach and enrollment efforts for their organizations. Benjamin led a statewide effort that served diverse communities that ranged from rural farming communities to urban immigrant communities. Flint led an outreach campaign within the African American community in Los Angeles that centered on the local beauty industry and faith-based institutions. The program that Mentesane led was embedded in a free clinic and pharmacy that serves a predominately low-income population with high rates of chronic illness. Despite differences in populations served, resources, and political support, the three panelists identified building trust within the community and meeting people where they are as key factors to enrollment—whether that meant go- ing to health clinics, libraries, churches, or even people’s homes. “You have to really think through for each population you are working with what are going to be the challenges,” said Benjamin. Flint noted that for the people she worked with, low health insurance literacy was an obstacle to trust. She said, “Utilizing your health insurance is a behavior that is learned.” She stated that when people would try to use their insurance and find the cost was not what they expect- ed, that eroded trust in the process. The three panelists also believed that in-person help was necessary not just for enrollment assistance but also for questions about health insurance use and access after enrollment. Flint remarked that the partnerships between community organizations to help with enrollment and education that had been formed over the past 3 years would become even more important in the future. “We did not create this problem of [the] uninsured in 5 or 10 years. It cer- tainly will not go away with 5 or 10 years of resource [allocation],” she said. Benjamin also noted that the issue of low health insurance literacy was not just one for consumers and patients. “I feel like a lot of education needs to happen on the [health care] provider side about insurance. I think a lot of providers do not really understand insurance,” she said. HOW HEALTH LITERACY AND HEALTH INSURANCE LITERACY CAN CONTRIBUTE TO ADDRESSING THE CHALLENGES This session featured two presentations that described how health literacy and health insurance literacy can ame- liorate some of the challenges that earlier speakers discussed. Catina O’Leary of Health Literacy Missouri began by saying that she wanted audience members to think of her talk as an application of health literacy strategies to health insurance literacy. According to O’Leary, one way in which Health Literacy Missouri applied health literacy strategies was to estab- lish a feedback mechanism with the enrollment assisters who were talking to people every day. It was a rolling process that allowed Health Literacy Missouri to tailor materials and information. Through this process they learned that in addition to simple materials and information, people want in-person contacts who could help them with questions and with gaining confidence. O’Leary noted that much of what was done in Missouri is transferable. They have set up a partnership with Oklahoma to share some of the knowledge they gained. 2

Looking toward the future, O’Leary said that her organization is going to continue to build on what it has already done to connect health and health insurance in people’s minds. She said she does not like the phrase “hard to engage” with regard to people who continue to be uninsured because that implies that it is the individual’s problem that he or she has not been engaged. O’Leary said she prefers to ask, “How do we figure out how to do the work we need to do with them so we can move them toward health and wellness?” The second presentation of this session from Judith Hibbard of the University of Oregon was on the con- tinuum of solutions to addressing low health literacy and where there are opportunities along that continuum for different interventions. Hibbard began by talking about the complexity of choice and the tasks involved in making choices. First, she said, people must process multiple pieces of information and different types of factors. Then they must apply their personal situation and weigh factors according to their own preferences. Finally, they must bring all of this together to make a choice. Hibbard said that this process is difficult for everyone but especially for those with literacy or numeracy challenges. According to Hibbard, the way that people deal with this complexity is by taking shortcuts, usually by just considering one factor, and doing this can undermine their self-interest. Hibbard summarized research that shows that how information is presented can increase people’s understand- ing and ability to make choices. She said this research pointed to some strategies that could help reduce the level of difficulty and help both high- and low-literacy and numeracy consumers choose a high-value plan. The placement of information makes a difference, said Hibbard. She noted that if information on plan quality was placed next to cost information, people were more likely to include it in their decision making. She also said that because research has shown that people tend to make health insurance decisions on the basis of premiums alone, showing the estimated total cost of the plan could help people make decisions that are better suited to their needs. Hibbard said that the continuum of solutions ranges from placing the burden entirely on the individual by sup- plying information without any interpretation to placing the burden entirely on the information provider by offering a default choice or a navigator to walk people through the decision-making process (see Figure 1). Moving from one end of the continuum to the other involves more time and resources on the part of the provider, Hibbard said. “What strat- egy do you employ, and what should be considered when?” asked Hibbard. In her opinion, Hibbard noted, the onus of interpreting the information should be shifted toward the information provider when the skill level of the users is lower, when common decision errors are known and can be countered, and when the stakes involved in the choices are high for individuals or society. FIGURE 1 Continuum of solutions. SOURCE: Hibbard presentation, July 21, 2016. 3

EFFORTS TO ADDRESS THE CHALLENGES The second panel session featured five presentations offering potential strategies for addressing challenges and solutions for different issues. Panel participants were Dara S. Taylor of Community Catalyst, Erin Hemlin from Young Invincibles, Robert Krughoff and Eric Ellsworth from Consumer’s Checkbook, Amy Cueva from Mad*Pow, and Renee Bougard from the National Library of Medicine (NLM). As she opened the panel presentations, Taylor noted that she would be focusing on the training and support that her organization provided to the broader enrollment-assister community. She said that to be effective, enrollment assisters must have a good understanding of health insurance policies and regulations, including tax issues, that affect the consumer. According to Taylor, the most successful resource that her organization offered to enrollment assis- ters was the one called “In the Loop.” This resource allowed enrollment assisters from every state and the District of Columbia to connect with one another and share knowledge and insights. Hemlin began by saying that her organization, Young Invincibles, had launched the Healthy Young America cam- paign as a coalition-building endeavor that seeks to raise education and awareness among young people about the ACA. She said that prior to the passage of the ACA, young people were uninsured at higher rates than any other age group. As a result, many young people who have never had health insurance are intimidated by the system, Hemlin said. The Healthy Young America Campaign sponsors National Youth Enrollment Day in order to reach out to younger people who may not be aware of enrollment deadlines or sure of what they need to do. She said that the group tries to create a sense of fun and celebration and to promote the idea that “getting [access to] health care is a huge rite of pas- sage.” She also noted that young people are unlikely to seek out help on their own and that it is important to take the message to them within their own communities. In addition, said Hemlin, young people are less likely to know how to use their health insurance to access health care. To address this, Hemlin’s organization developed an interactive game and a mobile app that offers step-by-step help in finding a doctor, accessing reproductive services, and completing other relevant tasks. Hemlin also said that it is important to explain the value of insurance to young people up front so that they believe they are getting something for the premium. Krughoff began by saying that Consumer’s Checkbook has published the Guide to Health Plans for federal employees and retirees for 36 years and has developed insurance plan comparison tools for marketplaces in five states. In his opinion, Krughoff said, there are several key factors for a good plan comparison tool, including total cost, the likelihood of very high cost if an unexpected health event occurs, lists of the doctors who participate in the plan, and the quality of the plan. There are challenges in communicating each of the key factors, said Krughoff, and often the simplifications or shortcuts that tools or individuals use are not reliable. Total cost and the likelihood of high cost are particularly difficult because it is challenging to predict the health care costs an individual will face over the course of any given year. In particular, said Krughoff, comparing plans on the basis of premium alone is a problematic shortcut because it ignores the potential for high out-of-pocket costs. Comparing plans on the basis of doctor availability and quality is difficult because filtering the information in certain ways (such as based on the participation of a particu- lar doctor) can hide information that might be more important to the consumer if he or she was made aware of it. The Consumer’s Checkbook plan comparison tool is useful even for those who do not know much about insurance, said Krughoff. He noted that most people do not want to know much about insurance. The challenge, according to Krughoff, is to be sure that people see and understand the things that are most important to them without giving them more information than they need or want. Cueva of Mad*Pow began her presentation by discussing what people expect from their interactions with insur- ance companies and providers. She said that people are used to doing business with companies such as Amazon, which offer sophisticated design and have invested in providing positive consumer experiences. “That is what they expect when they come to these experiences and interactions,” she said. Her organization has partnered with the Department of Health and Human Services (HHS) to sponsor a design challenge to create a readable medical bill, Cueva explained, calling medical bills “one of the primary frustration points for patients.” The challenge is to use human-centered design to overcome some of the issues that arise around medical billing, some of which may be caused by a lack of understanding of insurance or an insurance plan. Cueva presented the results of a survey con- ducted by Mad*Pow that highlighted some of the problems with the current system. Survey participants said that the system was too complicated, lacked transparency, and was time consuming. Cueva said that she hoped that providing a more understandable and accessible medical bill could alleviate some of the frustrations felt by consumers. The final presenter on the panel, Bougard, discussed the role of the NLM and public libraries in providing public outreach and education about the ACA and health in general. Bougard began by explaining that the National Network 4

of Libraries of Medicine is an organization with more than 6,400 members, each of whom has a mission to provide health information to health professionals and the public. “What we really do,” she said, “is provide access through outreach and training, ensuring that everybody in the U.S. has access to quality health information.” According to Bougard, the network has a history of collaborating with public libraries and community-based organizations to fulfill its mission. The network has been involved in a number of efforts to increase awareness about the ACA and health in- surance, said Bougard. The regional libraries of medicine (which are part of the network) have offered training to health professionals and librarians, held webinars to educate members on the ACA, and developed a webpage to link users with information. Bougard concluded by saying that libraries have often provided people with the information that they need to obtain health insurance and, in some cases, with the technological means for obtaining health insurance. STAKEHOLDER PANEL DISCUSSION TO REVIEW THE IDEAS OF THE DAY The last panel of the day was a moderated discussion of stakeholders giving their thoughts on the issues and conversa- tions of the day. The panelists were Cara James of the Centers for Medicare & Medicaid Services (CMS), Laura Morris of the Office of the Healthcare Advocate for the State of Connecticut, Kim Parson from Humana, and Mila Kofman from the DC Health Benefit Exchange Authority. The panel was moderated by Ruth Parker of Emory University, who began the discussion by asking the panelists what they believed were the lessons and opportunities identified during the workshop. James answered that for her one of the lessons was the value of partnerships, and she stated that over the life of the ACA she believes that HHS has gotten better at engaging partners in the process earlier and more productively. James also noted that the fragmentation of the U.S. health care system makes things more complicated but that policy makers are always trying to answer the question of how to make information more accessible and understandable. Morris said that for her an important point from the day’s presentations was the idea that in-person assistance was vital not just to enrollment but also to educating people about their plans and how to use them. Parson agreed and said that this assistance was important throughout the process because, for consumers, “You don’t know what you don’t know.” Kofman noted that in the beginning of the marketplace rollout, the focus was overwhelmingly on getting the technology to work, which left few resources for anything else. She said that as time went on, the lesson from the people working on enrollment was that consumers and patients needed more decision support and that designers of the marketplaces have tried to provide that. Kofman also said that one of the lessons she learned in her work on a state-based exchange is that technology is great for people who like it and use it, but it is “worthless really for people who do not use it.” Given that health insurance is so complex, Parker asked the panelists, what would they say is advisable to make it more understandable? Both James and Kofman answered that standardization is important because it allows con- sumers to compare “apples to apples.” Parson added that language is also important. She gave as an example the fact that preventive services under the ACA are said to be “free.” “Everyone’s mother taught them there is no free lunch,” said Parson, noting that saying a service is free rather than that it is part of a person’s coverage adds to the confusion. Kofman agreed, noting that using the right language fosters trust. Parker then asked about disseminating best practices and what the panelists thought could be done to encour- age that. Morris answered that she would like to see more information shared across states and was always interested in hearing what worked in other places. James answered that CMS and the NLM have a number of methods for doing that, such as a weekly conference call for those who work on these issues. Kofman added that her organization has shared information with neighboring states and the Obama administration and that she sends her outreach director to conferences to speak about what has worked in Washington, DC. Parker noted that several speakers throughout the day had opined that the remaining uninsured would be the most difficult to reach. She asked the panelists how they thought this population could be engaged, given resource limitations. James responded that there is a business case to be made for expanding the ranks of the insured and that may help to attract resources to the effort. Kofman answered that she believes that the federal government should be asked to commit to funding consumer assistance programs to help people get and use coverage. Parker concluded the discussion by observing that articulating what is needed, what we have learned, and what works is an important step to solving the issues raised during the workshop.♦♦♦ 5

DISCLAIMER: This Proceedings of a Workshop—in Brief was prepared by Melissa G. French as a factual summary of what occurred at the meeting. The statements made are those of the rapporteur or individual meeting participants and do not necessarily represent the views of all meeting participants, the planning committee, or the National Academies of Sciences, Engineering, and Medicine. The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for orga- nizing the workshop, identifying topics, and choosing speakers. The responsibility for the published Proceedings of a Workshop—in Brief rests with the institution. REVIEWERS: To ensure that it meets institutional standards for quality and objectivity, this Proceedings of a Workshop—in Brief was reviewed by Alicia Fernandez, University of California, San Francisco; and MaryLynn Ostrowski, Aetna Foundation. Lauren Shern, National Academies of Sciences, Engineering, and Medicine, served as the review coordinator. SPONSORS: This workshop was partially supported by AbbVie Inc.; the Aetna Foundation; the Agency for Healthcare Research and Quality (HHSP23337024); the American Dental Association; Bristol-Myers Squibb; East Bay Community Foundation (Kaiser Permanente); Eli Lilly and Company; Health Literacy Missouri; Health Literacy Partners; Health Resourc- es and Services Administration (HHSH25034011T); Humana; Institute for Healthcare Advancement; Merck & Co., Inc.; National Institutes of Health (HHSN26300054); National Library of Medicine; Northwell Health; Office of Disease Preven- tion and Health Promotion (HHSP23337043); and UnitedHealth Group. For additional information regarding the meeting, visit nationalacademies.org/healthliteracyRT. Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2016. Health insurance and insights from health literacy: Helping consumers understand: Proceedings of a workshop—in brief. Washington, DC: The National Academies Press. doi: 10.17226/24613. Health and Medicine Division Copyright 2016 by the National Academy of Sciences. All rights reserved.

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On July 21, 2016, the Roundtable on Health Literacy of the National Academies of Sciences, Engineering, and Medicine convened a workshop on health literacy and health insurance literacy in the context of health reform in the United States. Since 2010, the year the Patient Protection and Affordable Care Act (ACA) became law, the roundtable has convened two workshops related to this topic as well as commissioned two papers, and several members have prepared individually written perspectives. The roundtable's attention to the topic of health insurance is appropriate because health reform has created major changes in the health care system in this country. It has brought millions of people into the system that previously did not have access. In addition, many of these individuals have limited experience with health care and health insurance and are from populations that traditionally have high rates of low health literacy. The workshop focused on the challenges and opportunities in helping consumers obtain, understand, and use health insurance.

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