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Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop (2020)

Chapter: 3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills

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Suggested Citation:"3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Suggested Citation:"3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Suggested Citation:"3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Suggested Citation:"3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Suggested Citation:"3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Suggested Citation:"3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Suggested Citation:"3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 25
Suggested Citation:"3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 26
Suggested Citation:"3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 27
Suggested Citation:"3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 28
Suggested Citation:"3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Suggested Citation:"3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 30
Suggested Citation:"3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 31
Suggested Citation:"3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Page 32
Suggested Citation:"3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 33
Suggested Citation:"3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 34
Suggested Citation:"3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 35
Suggested Citation:"3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 36
Suggested Citation:"3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 37
Suggested Citation:"3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 38
Suggested Citation:"3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 39
Suggested Citation:"3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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3 Places: Where Youth Confront Health Literacy Challenges and Develop Skills The first panel of the workshop was moderated by Marin Allen, who served as deputy associate director of communications and public liaison and director of public information in the Office of the Director at the National Institutes of Health (NIH) until 2017, and as scholar-in-residence at the Annenberg Public Policy Center at the University of Pennsylvania between 2017 and 2018. Allen introduced the panelists: Lloyd Kolbe, emer- itus professor of applied health science at the Indiana University School of Public Health-Bloomington; Laura Noonan, founding organizer and cur- rent director of the Center for Advancing Pediatric Excellence at the Levine Children’s Hospital/Atrium Health; and Jennifer Manganello, professor at the University at Albany School of Public Health. The panel was charged with discussing the places where youth experi- ence health literacy challenges and where they develop skills. HEALTH LITERACY IN SCHOOLS Lloyd Kolbe, Indiana University School of Public Health-Bloomington School Health Education The U.S. prekindergarten (pre-K) through grade 12 school system includes 140,000 public and private schools in 13,000 school districts that employ 6 million teachers and staff, who serve 57 million students (NCES, 2011, 2012, 2017b, 2019). Of those students, 27 percent live in a mother- 19 PREPUBLICATION COPY—Uncorrected Proofs

20 DEVELOPING HEALTH LITERACY SKILLS IN CHILDREN AND YOUTH only household, 20 percent live in poverty, and 13 percent receive special education services for disabilities (NCES, 2017a). Evidence from the past two decades suggests that school health pro- grams can improve both public health outcomes and education outcomes (CDC, 2019c; IOM, 1997, 2015; Kolbe, 2019; McDaid, 2016; NASEM, 2019a,c). In 2015, the Centers for Disease Control and Prevention (CDC) and the Association for Supervision and Curriculum Development devel- oped the Whole School, Whole Community, Whole Child (WSCC) Frame- work (ASCD, 2014; CDC, 2020c), which includes 10 components: 1. Health education 2. Physical education and physical activity 3. Nutrition environment and services 4. Social and emotional school climate 5. Physical environment 6. Health services 7. Counseling, psychological, and social services 8. Employee wellness 9. Community involvement 10. Family engagement School health education is a process for teaching health, either through categorical health education about a specific topic, or through comprehen­ sive health education. Some important categorical school health education topics include the six categories of risk behaviors, monitored since the early 1990s by CDC’s Youth Risk Behavior Surveillance System. These behaviors are established during childhood and adolescence, are difficult to change once established, and are associated with most of the morbidity and mortality in the United States (Kann et al., 2018). They include behav- iors that contribute to unintentional injuries and violence and include the use of alcohol and other drugs, sexual behaviors that result in unintended pregnancy or sexually transmitted infection, tobacco use, unhealthy dietary behaviors, and inadequate physical activity. Some important new categorical topics include healthy behavioral, emotional, and mental development, participating in one’s own health care, online and media health literacy, genomics, the human microbiome, sleep, vaccinations, antibiotic resistance, emerging and reemerging infec- tious diseases, environmental health, climate change, social determinants of health, and bioethics. NIH has developed a series of curriculum supple- ments to address some of these new categorical topics during the past two decades (NIH, n.d.). NIH is developing K–12 science, technology, engineering, and mathematics (STEM) education to improve scientific train- ing and public health literacy (NIH, 2016), and the National Institute of PREPUBLICATION COPY—Uncorrected Proofs

PLACES 21 Environmental Health Sciences is developing environmental health literacy and education (Finn and O’Fallon, 2017; NIEHS, 2019). Additionally, the National Academies of Sciences, Engineering, and Medicine have addressed school climate change education (NRC, 2012, 2016) and have developed a national agenda for fostering healthy mental, emotional, and behavioral development in children and youth—specifically addressing strategies for education settings (NASEM, 2019b). In contrast to categorical health education, comprehensive school health education includes a planned, sequential curriculum taught from pre-K to grade 12 by teachers specifically trained to help students progressively acquire the knowledge, attitudes, and skills they need to make health-related decisions throughout their lifetimes across multiple categorical health topic areas. The ultimate goals are to help students acquire health literacy skills, adopt healthy behaviors, and promote the health of others (CDC, 2019f; Kolbe, 2019). About 10 years ago, five national organizations developed the National Health Education Standards (NHES) to improve school health education (CDC, 2019d; Joint Committee on National Health Education Standards, 1995, 2007; Tappe et al., 2009). These standards describe what students should know and be able to do by grades 2, 5, 8, and 12 to pro- mote personal, family, and community health (see p. 12). Student Health Literacy The Institute of Medicine (IOM) report Health Literacy: A Prescription to End Confusion describes health literacy as “the degree to which indi- viduals have the capacity to obtain, process, and understand basic health information needed to make appropriate health decisions” (IOM, 2004, p. 2). The report states that the “most effective means to improve health literacy is to ensure that education about health is a part of the curriculum at all levels of education” (IOM, 2004, p. 149). While health education is a process, student health literacy is a critical health and education outcome. Goal 3 of the National Action Plan to Improve Health Literacy from the U.S. Department of Health and Human Services (HHS) is to “incorporate accurate, standards-based, and developmentally appropriate health and science information and curricula in child care and education through the university level” (HHS, 2010, p. 32). To improve health literacy in the United States, Kolbe said, “we need to better develop the theory and measurement of student health literacy.” He continued, “we cannot expect students to know everything about health, but will need to carefully delineate what is most vital for young people to know and be able to do.” He added that this will depend on the definition of health literacy; student developmental levels; the number and scope of categorical topics; critical health knowledge, attitudes, beliefs; cognitive, emotional, PREPUBLICATION COPY—Uncorrected Proofs

22 DEVELOPING HEALTH LITERACY SKILLS IN CHILDREN AND YOUTH physical, and social skills; and whether students must engage in a healthy behavior in order to be considered health literate about that behavior. Teaching Health In 2002, Congress enacted the No Child Left Behind Act, which focused schools on testing and improving student proficiency in 10 core academic subjects:1 1. English 2. Reading/Language Arts 3. Math 4. Science 5. Foreign Language 6. Civics and Government 7. Economics 8. Arts 9. History 10. Geography In 2015, Congress passed the Every Student Succeeds Act, which main- tained but modified the focus on student testing, and added “health” among 17 other subject areas (including music and environmental education) that would be considered part of a well-rounded education.2 Today’s schools must ensure that students are proficient in tested subjects, but health is not one of them. Still, many states, school districts, and schools have policies that encourage school health education. A few surveillance systems monitor the extent to which schools address various school health program compo- nents, including school health education. These systems also monitor the extent to which schools specifically address the NHES, though they do not measure the extent to which students achieve the NHES. Illustratively, the National Association of State Boards of Education maintains a database of all existing state statutory and regulatory language for each of the ten components of CDC’s WSCC Framework (NASBE, n.d.). In 2017, 25 states reported that they had policies for schools to address the NHES. Among the many health education topics that state policies addressed, 40 states had policies to support nutrition education and 37 had policies to support social and emotional learning in health education (Chriqui et al., 2019). 1  107th U.S. Congress, 2002, Public Law 107-110, No Child Left Behind Act, January 8, 2002. 2  114th U.S. Congress, 2015, Public Law 114-95, Every Student Succeeds Act, December 10, 2015. PREPUBLICATION COPY—Uncorrected Proofs

PLACES 23 Among the nation’s 13,000 school districts, the CDC School Health Policies and Practices Study found that in 2016, 63 percent reported they were following the NHES. Among the many health education topics that district policies addressed, 85 percent of districts required that high schools teach nutrition, and 82 percent required that high schools teach emotional and mental health (CDC, 2017). CDC’s School Health Profiles monitors school health education and the NHES among the nation’s public secondary schools, grades 6 through 12. In 2018, the percentage of secondary schools in each state that reported they required students to take two or more health education courses varied by state, from 11 percent of schools in the state with the lowest percentage of this requirement to 89 percent of schools in the state with the highest percentage. The percentage of schools that taught students to access valid information, products, and services to enhance health ranged from 69 to 96 percent of schools in various states. Meanwhile, 76 to 98 percent of schools in various states taught students to use interpersonal skills to avoid risk behaviors (CDC, 2019g). As a result, some might question whether school health education has been a focus for the fields of public health and medicine, said Kolbe, or for the education field, which also faces challenges in addressing this. Numerous categorical topic area programs often compete for scarce time and resources. Most who teach health in secondary schools are principally trained to teach physical education. There is little support for integrated academic school health education professional preparation, research, and service programs. It is not apparent that a comprehensive plan exists to improve school health education and health literacy (ASCD, 2015; IOM, 1997, 2015; Kolbe, 2015, 2019). However, the Healthy People 2030 National Health Objectives3 might include an objective to increase the percentage of secondary schools that require students to take at least two health education courses in grades 6 through 12. Additionally, more than 100 national organizations are cur- rently working to improve school health programs (Kolbe, 2015); for exam- ple, the Health Resources and Services Administration (HRSA) convenes a National Coordinating Committee on School Health and Safety. CDC maintains school health surveillance systems, supports state and national non­ overnmental organizational efforts to improve school health programs, g maintains school health and health literacy websites, and has published char- acteristics of effective school health education curricula and a Health Educa- 3  Healthy People is a “national effort that sets goals and objectives to improve the health and well-being of people in the United States. Healthy People 2030 is the fifth edition of Healthy People. It aims at new challenges and builds on lessons learned from its first 4 decades” (see healthypeople.gov for more information) (accessed June 2, 2020). PREPUBLICATION COPY—Uncorrected Proofs

24 DEVELOPING HEALTH LITERACY SKILLS IN CHILDREN AND YOUTH tion Curriculum Analysis Tool (CDC, 2015, 2019a,b,c,d,e,f,g, 2020a,b,c). CDC also supports school health education teacher training and parent engagement. The Society for Public Health Education (SOPHE) recently published 11 challenges and related recommendations to improve school health education and provides national leadership for the accreditation of university health education teacher training programs and for the certifica- tion of secondary school health education teachers (Birch and Auld, 2019; Birch et al., 2019; Mann and Lohrmann, 2019; Videto and Dake, 2019). The IOM’s consensus study report Schools and Health: Our Nation’s Investment recommends that all students receive sequential health educa- tion every year from elementary through junior high school (IOM, 1997). It also recommends that secondary school students receive at minimum a one-semester health education course as a requirement for school gradu- ation and that school health education be based on the NHES, emphasize the six priority categorical behavioral categories, and be taught by qualified health education teachers. It also recommends that colleges of education should prepare all elementary school teachers to teach health education. In addition, A Prescription to End Confusion recommends that the U.S. Department of Education (ED) and HHS should convene task forces to identify actions that relevant agencies should take to improve health lit- eracy in schools (IOM, 2004). It also recommends that HRSA, CDC, and ED collaboratively fund demonstration projects in each state, and that the National Science Foundation, the U.S. Department of Energy, and the National Institute of Child Health and Human Development fund research to improve health literacy (IOM, 2004). Actions that might be considered include developing a national agenda for school health education to improve health literacy, including • A conceptual framework • Means to measure processes and outcomes • Means to implement school health education to scale • Ongoing research and evaluation HEALTH CARE ORGANIZATIONS Laura Noonan, Atrium Health In 2009, Atrium Health commissioned a system-wide health literacy task force, led by Noonan. During the next decade, the large health care organization began to strategically incorporate health literacy practices at every level. In 2010, the task force and organizational leadership imple- mented an initiative called TeachWell, focusing on two “high-leverage” changes: Teach Back and Ask Me 3 (Brach, 2017). Ten thousand nurses PREPUBLICATION COPY—Uncorrected Proofs

PLACES 25 and all of the employees at 25 ambulatory faculty practices affiliated with Atrium Health (then Carolinas HealthCare System) were trained. Between 2013 and 2014, a health literacy steering committee with representation across the organization was formed, “achieving excellence in health lit- eracy” was identified as a priority on the Atrium Health Strategic Road Map, and Atrium Health adopted the framework published in the National Academy of Medicine Perspectives paper on the subject, which states that a “health literate health care organization: 1. Has leadership that makes health literacy integral to its mission, structure, and operations. 2. Integrates health literacy into planning, evaluation measures, patient safety, and quality improvement. 3. Prepares the workforce to be health literate and monitors progress. 4. Includes populations served in the design, implementation, and evaluation of health information and services. 5. Meets the needs of populations with a range of health literacy skills while avoiding stigmatization. 6. Uses health literacy strategies in interpersonal communications and confirms understanding at all points of contact. 7. Provides easy access to health information and services and naviga- tion assistance. 8. Designs and distributes print, audiovisual, and social media content that is easy to understand and act on. 9. Addresses health literacy in high-risk situations, including care transitions and communications about medicines. 10. Communicates clearly what health plans cover and what indi­ viduals will have to pay for services” (Brach et al., 2012). Since 2015, Atrium Health has added health literacy as a nursing competency, launched health literacy trainings for physicians, established a patient and family health education governance council, presented on its work at the Institute for Healthcare Advancement conference, been featured in “The Journey to Become a Health Literate Organization: A Snapshot of Health System Improvement” (Brach, 2017), hosted its own health literacy summit, optimized its health literacy review process, implemented a “plain talk” initiative with the Carolinas Hospitalist Group, and began working on a patient education electronic medical record platform (Brach, 2017). There are 11 executive functions in the frontal lobes that enable indi- viduals to care for their own health that emerge from age 3 up to age 26, which means that health care organizations like Atrium Health require a patient-centered, child-centered, and adolescent-centered approach to their work in order to successfully care for patients. There are many fac- PREPUBLICATION COPY—Uncorrected Proofs

26 DEVELOPING HEALTH LITERACY SKILLS IN CHILDREN AND YOUTH tors that can affect the path from a child’s literacy development to their health outcomes, not only including child knowledge and behaviors but several external influences, which may include adverse childhood events; cultural factors; parent literacy, knowledge, and health literacy; transporta- tion access; and health care systems (see Figure 3-1). While knowledge and behavior are the most frequently measured out- comes and researchers know that parental low-literacy levels are often associated with poor health knowledge and behaviors, and that adolescent low-literacy levels are associated with adverse “risk-taking” behaviors, it is still difficult to draw conclusions about the cause and effect relationship between literacy and child health outcomes. Coproduction: Addressing the Patient Burden and Building Patient Capacity Atrium Health aims to improve health literacy in youth through the use of coproduction, quality improvement, and patient portals. Coproduction was first described in the 1970s in the social sciences, as a concept whereby end users should help developers design services, and in some cases, deliver services. Coproduction, as it applies to health care and health care orga- nizations, is patients, families, clinicians, and researchers, collaborating FIGURE 3-1 The working relationship between child literacy and child health outcomes. SOURCES: As presented by Laura Noonan at the workshop on Developing Health Literacy Skills in Children and Youth on November 19, 2019 (adapted from Darren ­ DeWalt). PREPUBLICATION COPY—Uncorrected Proofs

PLACES 27 as equal and reciprocal contributors to produce information (e.g., clinical data, patient-reported outcomes), knowledge (informal insights and formal research), and know-how (expertise) to improve health care and health outcomes. In coproduction, patients, parents, and providers work together to create the best system of care. The core items of coproduction are: • Working as equals • Believing every person adds value • Producing as a team o Data o Insight o Skill • Improving care and health for all Although coproduction requires equality and reciprocity, the two main groups (health care providers and patients and families) start off on unequal ground. Whereas health care providers are able to incorporate the processes of coproduction into their practice, participants, including patients and their families, face other challenges. Families must manage the process of coproduction while caring for their child, managing the family, and work- ing outside the home, and patients themselves must navigate coproduction while in treatment. Because of this, coproduction still requires new thinking to work in an effective manner, equally. Coproduction does help balance the scale of burden versus capacity for self-management. It can increase the youth skills that are involved in self-managing care and decrease the burden of navigating the health care system. One example of this is the Pediatric Nephrology Center for Excel- lence at Atrium Health. Their mission is to promote patient and family- centered care for youth impacted with kidney disease by leveraging patient and clinician engagement, clinical research, improvement science, and best practices to transform the overall patient experience and quality of life. The nephrology coproduction group works on education, quality improvement, innovation, and research by using focus groups, individual groups, round-robin table time, and organizing materials. The focus groups are unique: They are held at different times of day in different locations, and facilitators provide child care, food, and transportation. Patients and their caregivers help health care providers develop materials as well as processes for the ways that care is delivered in the clinic. For instance, the focus group is quite vocal about eliminating no-shows and about late poli- cies that do not change behavior and punish patients. Individual groups work on creating materials. For example, when developing nutrition mate- rials, participants asked researchers to clarify healthier options and choices to make when going to a fast-food restaurant, highlighting that a list of PREPUBLICATION COPY—Uncorrected Proofs

28 DEVELOPING HEALTH LITERACY SKILLS IN CHILDREN AND YOUTH forbidden items is not particularly helpful. Coproduction participants are able to develop materials and have their peers evaluate how useful they are. Round-robin table time is an opportunity to discuss ideas and implementa- tion. Participants challenge health care providers to think about care deliv- ery differently—for example, “Why am I made to come to the office a full hour before my CT scan? Why can’t we do that differently?” Participants also help health care providers identify information and materials that are considered “must-know” for patients and those that are interesting but not required for successful disease management. Youth patients are also taught quality improvement methodology in coproduction, which can strengthen health literacy skills, including finding the root cause; looking through the eyes of the end user (patient); testing changes with small, rapid cycles; and using data to drive the work. Atrium Health’s coproduction work has youth patients developing numeracy and literacy skills while creating a system that decreases the burden. Learning Health Systems and Quality Improvement Youth are involved in many ways in learning health systems. For exam- ple, Improve Care Now is a learning health system focused on improving care for youth with inflammatory bowel disease. The majority of the work that goes on there comes from the teen work group. Their work has pushed the remission rate from 38 to 82 percent in the nation, without any new treatments, but by working together with families, and specifically young patients, to improve the processes of care in the health systems, decreasing burden and increasing capacity. The Pediatric Rheumatology Care & Out- comes Improvement Network, Improving Renal Outcomes Collaborative, Epilepsy Learning Healthcare System, and ST3P-UP Transition Program: Sickle Cell Quality Improvement Collaborative are all working to improve health literacy skills among their constituents. ST3P UP Transition Program’s teams consist of pediatric providers, adult providers, the local sickle cell organization or community-based orga- nization, and youth with sickle cell disease. The teams can only operate if they have all of those members, becoming integrated quality improvement teams that improve the transition from child to adult health care. ST3P UP Transition Program also uses a readiness assessment, which asks questions about health management, getting prescriptions filled, and scheduling appointments. If a gap is identified in patient skills, the patient will be referred to the local sickle cell organization or community-based organization, and the team as a whole will work to improve health out- comes, specifically the health literacy skills of the youth patients. Quality improvement in action includes learning sessions and action periods, which include youth members who sit on teams, speak on panels, PREPUBLICATION COPY—Uncorrected Proofs

PLACES 29 share their experiences with disease, work on processes to make it easier for patients, and use data to understand the process. Patient Portals Patient portals have great potential in teaching youth how to man- age their health and develop health literacy skills. They can increase use capacity by making records, videos, and educational materials accessible in one location, and youth are typically more digitally savvy than other age groups, as the Internet is an extensive part of daily life for most of them in the United States. There are also special challenges for the teen age group. Different organizations use patient portals differently—in some cases, neither youth patients (between ages 14 and 17) nor their parents have access to their portal due to privacy laws around sexual and mental health. In other cases, both parent and physician written permission are required for youths to access their own patient portals. Other barriers are not age specific and include limited cell phone and Internet access, or difficulty navigating the portals themselves. Questions and potential topics for future research as identified by Noonan can be found in Box 3-1. BOX 3-1 Areas for Future Research as Identified by Laura Noonan •  oes being involved in opportunities like coproduction increase health D literacy? Can that be measured? •  s there anything available through transition-readiness assessment mea- I surements that could be used as a proxy measure for health literacy skills? •  ore exploration of risks, benefits, and ramifications of privacy and other M policies regarding patient portal use by 14–17-year-olds. SOURCE: Adapted from a presentation by Laura Noonan at the workshop on Developing Health Literacy Skills in Children and Youth on November 19, 2019. PREPUBLICATION COPY—Uncorrected Proofs

30 DEVELOPING HEALTH LITERACY SKILLS IN CHILDREN AND YOUTH HEALTH LITERACY AND YOUTH ONLINE Jennifer Manganello, University at Albany School of Public Health Why the Online Environment Is Important for Youth Youth are a connected population. According to the Pew Research Center, 45 percent of teens say that they are online “almost constantly” (Anderson et al., 2018a; Lenhart et al., 2010). In 2010, the Pew Research Center released a study noting that about one-third of teens reported searching for health information online (Lenhart et al., 2010). Meanwhile, smartphone ownership continually increased, with more than 90 percent of teens reporting having a smartphone (Rideout and Robb, 2019), meaning that most teens have access to the Internet. Youth under age 13 are legally not allowed to have social media accounts, though many do. Ninety-seven percent of youth between ages 13 and 17 use social media (Anderson et al., 2018b), primarily YouTube, Instagram, and Snapchat. Facebook is less popular among teens though their parents and grandparents use the social media website. There have been mixed findings for health effects, with some studies demonstrating an impact on health behaviors like alcohol and e-cigarette use, but other s ­tudies demonstrating that social media can also be used for successful health interventions (Kranzler and Bleakley, 2019). Teens themselves also have mixed reviews about social media: It can be a way to connect to their peers and find support, but it can also be a source of bullying or peer pres- sure (Anderson et al., 2018a). The concept of media use has also expanded for youth. It is more likely that teens will identify different types of media as devices or apps (like Xbox or TikTok) than types like television, radio, movies, video games, and so forth, which makes measuring media use difficult. How the Online Environment Relates to Health Literacy The online environment requires skills to navigate it, but it can also be used to build skills and educate users about health. E-health literacy can be viewed as a subset of health literacy, in that it focuses specifically digital resources. There are other related types of literacies that affect what youth are able to do online, including media literacy, information literacy, and science literacy. Of note, Karnoe and colleagues (2018) published an eHealth Literacy Assessment Toolkit, which combines health literacy, com- puter and digital literacy, and information literacy, and has seven unique scales. The skills in question are taught mainly through classes in school: science, health education, computer literacy, family and consumer science, PREPUBLICATION COPY—Uncorrected Proofs

PLACES 31 and more. Other learning opportunities may come from parents, libraries, after-school programs, summer camps, health care facilities, and online resources. The NHES Standards 2 and 8 in particular highlight how media and technology can play a major role in this crucial skill development (see p. 12 for a full list of the NHES). One of the main uses of the online environment is to seek health information. The online environment can be a great resource for youths, but something as simple as “stomach pain” in a search engine will provide more than 250 million results. Youth need the skills to sort through this information, and even teens with seemingly higher levels of health literacy can struggle, especially with sorting information. The online environment can also be a source for unintentional exposure to negative health messages or health misinformation. Fortunately, there are some health websites spe- cifically designed for youth, including KidsHealth.gov, which has different sections for children, teens, parents, and educators. When it comes to using the Internet for health-related topics, information-seeking is the most com- mon use (Park and Kwon, 2018). Common topics include sports injuries; influenza; chronic diseases, specifically asthma; sexual health; fitness; and mental health. Increasingly with age, youth use and rely on online sources for health information. They also report using online support groups and communities; for example, for youth with specific chronic health conditions, or for lesbian, gay, bisexual, transgender, and queer or questioning youth. Youth do have concerns about privacy and the accuracy of online information; these could be addressed with health literacy interventions. Youth also prefer websites that are updated and easy to use, high- lighting health literacy as an intersection of skills that youth have and the environment they are navigating. Health organizations that post informa- tion online should keep this in mind: They can build youth health literacy by making their information easier to find and understand. Also, some companies now have online courses available for purchase. These are often used by parents who homeschool their children, and some feature health literacy–related content. For example, a digital literacy curriculum is avail- able for free; it is not necessarily specific to health literacy. How the Online Environment Can Be Used for Interventions There are three major types of e-health interventions and studies. The first type focuses on e-health interventions, meaning it uses some kind of technology to teach teens about health for the purpose of changing knowl- edge or behaviors such as smoking prevention or reducing indoor tanning (Hillhouse et al., 2017; Khalil et al., 2019). These types of interventions should not be categorized as “health literacy interventions” because they PREPUBLICATION COPY—Uncorrected Proofs

32 DEVELOPING HEALTH LITERACY SKILLS IN CHILDREN AND YOUTH are not necessarily teaching skills, but they may incorporate some compo- nents of health literacy principles. The second type includes e-health literacy interventions. These are designed to build e-health literacy skills, which are the skills specifically related to searching for information online. Those skills can be developed through online or in-person programs, and might be taught, for example, in a health education class or after-school program. They are meant to improve e-health literacy so that teens are better able to navigate the health environment online. The third type includes online health literacy interventions. These interventions aim to develop general health literacy skills, which may include e-health literacy skills, but they are done in the online environment. Get Health’e Program Manganello developed an online program called Get Health’e, which is designed to teach health literacy skills.4 The first module focuses on e-health literacy and takes less than 1 hour. It includes plain-language text, short videos, and is in color. The module contains six lessons: 1. What is e-health literacy? 2. Online health information 3. Patient portals 4. Social media 5. Health apps 6. Wearable devices A pilot test evaluation had a sample size of 145, with an age range of 18 to 24 years old. The sample was mostly female and most were students. Fifty-seven percent of the participants attended a 4-year college or university, 18 percent attended a community college, and 11 percent attended another type of school. Each module had five knowledge-based multiple-choice questions at the end. Repeated analysis-of-variance mea- sures were used to compare changes between pre- and post-quiz scores to find a medium effect size. The students who participated did have an increase in knowledge after completing the lessons. Focus group and survey results revealed that participants not only overwhelmingly agreed that the program would be appropriate for teens younger than 18, but thought it would better serve that age group, before members of that group have to begin navigating the health system on their own. Major issues and questions about youth and using the online environ- ment include 4  For more information, see http://www.gethealthe.org (accessed August 15, 2020). PREPUBLICATION COPY—Uncorrected Proofs

PLACES 33 • Do youth have the skills needed to use the online environment to improve their health? • Are youth able to critically evaluate information and messages they see? • The digital divide: Most have access to the online environment, but some access may be inconsistent or limited (i.e., data limits), and what about skills or outcomes of use? • How various youth access the Internet may differ significantly. • Parents and families have different rules about interacting with the online environment. • Libraries and schools often have filters, restricting certain content. There is also a lot of potential within the online environment: • Provides greater access to health information • Allows youth to connect with and learn from others • Provides an easy way to host programs, videos, and courses to teach health literacy skills to youth • Youth are already accustomed to doing everything online • Can consider how to use online resources to better connect youth to health services • Can use a youth-engaged approach to designing information and programs Ideas for future research and practice as identified by Manganello can be found in Box 3-2. BOX 3-2 Areas for Future Research as Identified by Jennifer Manganello •  onduct research to better understand the links between the online envi- C ronment and health literacy (issues and potential). •  onsider new measurement tools. C •  upport funding for the development of programs to build skills. S •  ncourage multidisciplinary collaboration: public health, communication, E education, information studies, and computer science. •  artner with online learning companies, schools, and community P organizations. SOURCE: Adapted from a presentation by Jennifer Manganello at the workshop on Developing Health Literacy Skills in Children and Youth on November 19, 2019. PREPUBLICATION COPY—Uncorrected Proofs

34 DEVELOPING HEALTH LITERACY SKILLS IN CHILDREN AND YOUTH DISCUSSION Terry Davis from Louisiana State University Health Shreveport asked Noonan about the process to engage participants in coproduction, noting that in her own experience, those who want to participate in such projects are often already highly engaged, or have higher levels of health literacy and access to health care services. Noonan agreed that it was a huge challenge for her team as well. The nephrology groups she had discussed earlier were “very intentional” about finding the right mix of patients and continuing to search until they had the breadth of diversity required to ensure the project was meaningful. She noted, “We found it especially challenging to reach individuals with limited English proficiency, along with other communities that are more suspicious of the health system.” Terri Ann Parnell from Health Literacy Partners added that in a similar project, she had found that it was effective to have patients who were “early adopters” of such programs serve as recruiters for other patients. Bonni Hodges from State University of New York (SUNY) Cortland and SOPHE noted that health literacy skill development needs to start early in schools. She asked the panel, “What is the pedagogy of health literacy? How do we teach preprofessional folks how to teach health literacy skills?” Kolbe replied that the question highlights the complexity of combin- ing teaching health literacy skills with any other educational discipline; for example, physical education. He pointed out that SOPHE has led efforts to credential secondary school health education teachers, but that the poten- tial utility of such credentialing could be limited by unrelated factors. A school administrator with an ever-shrinking budget might not have a choice but to hire someone primarily trained in physical education and also certi- fied to teach health education as opposed to a SOPHE-credentialed health education teacher. Manganello added that school health education is particularly complex for students with individualized education programs (IEPs), in that there are usually not specialized health education classes for them. Importantly, Manganello noted, students with special needs or disabilities who have IEPs should have access to comprehensive health education. Earnestine Willis from the Medical College of Wisconsin asked how the panelists sustain or evolve models so that they remain relevant as their communities change. Manganello said that she uses her model as a framework, considering it more as a representation of the socioecological model, applied to a certain population around the topic of health literacy, and she adjusts it depending on the project or how she needs to use it. PREPUBLICATION COPY—Uncorrected Proofs

PLACES 35 Olayinka Shiyanbola from the University of Wisconsin–Madison School of Pharmacy asked Manganello how youth find health information at all, considering that there are access issues to getting online, and that minority and underserved populations, who are more likely to have limited health literacy, are even more likely to have access issues. Manganello replied that there are some phenomenal resources about health that are online, but they are not available in one place. One plan she has is to consolidate informa- tion where gaps exist, and better disseminate it so that youth know where it is and how to access it. Elaine Auld from SOPHE asked if the panelists thought health literacy could ever be a metric for quality school health education and public accountability in the way many STEM subjects are, knowing that there is a lot of research needed in terms of how it is measured. Kolbe replied that unless health researchers can work with their col- leagues in education (who would be asked to implement such health education programs and use health literacy assessments) in a sustained, multidisciplinary capacity, it would be very difficult to achieve this without looking at additional educational outcomes. Sneha Dave from Health Advocacy Summit asked Noonan if social workers were a part of any coproduction plans, noting that social workers can provide holistic care, including promoting health literacy. Noonan replied that it varies across the country and is based on the health care system’s resources. She added that there are social workers on all of the teams at Atrium Health, adding that Atrium Health is fortunate to have that in their quality improvement process right now. However, she said, they are not working in primary care, nor in the pediatric general population of private practices, where they could also be a huge benefit to the care team and to patients. Dave asked Noonan about the process by which medical students are taught about IEPs and 504 plans.5 Noonan replied that it is a question of when to incorporate those details into a pediatric residency curriculum, or a medical school curriculum, adding that she learned about both in medical school, but did not realize their importance until well after she obtained her degree. She also added that in North Carolina, schools cannot sug- gest that a child should have a 504 plan, because to do so is considered discriminatory. Mareesha Walker from Children’s National Hospital asked what pedi- atric health systems might be able to do to fill the gap around comprehen- sive health education. Kolbe noted that Washington, DC, has done a terrific 5  For more information about the differences between an IEP and 504 plan, see https:// www.washington.edu/accesscomputing/what-difference-between-iep-and-504-plan (accessed May 5, 2020). PREPUBLICATION COPY—Uncorrected Proofs

36 DEVELOPING HEALTH LITERACY SKILLS IN CHILDREN AND YOUTH job at implementing broad-based school programs, and that one of the reasons CDC developed the WSCC framework was because health services and health education are integrated and need to complement each other. He added that the American Academy of Pediatrics has been supportive of that integration, addressing it in its guidelines, School Health Policy and Practice.6 Noonan added that Atrium Health provides virtual clinics for schools, which has resulted in dropping absentee rates at the school by about 30 per- cent. Children’s hospitals can help lead the way, she said, as long as they collaborate with school systems and other community-based organizations to change outcomes. Partnership is also a way to build trust among patients, with multiple organizations and sectors working to serve their needs. Elizabeth Cook from Child Trends asked if school-based health centers are particularly good models for improving health literacy. Kolbe answered that the evolution of school-based health centers has been rapid and serves as a major way to improve health. The still evolving data on school-based health centers, continued Kolbe, suggest that they have a positive effect, particularly on students with chronic health conditions by improving or increasing their attendance when they otherwise might be unable to either attend or adequately pay attention because of their health condition. School-based health centers provide an important way to address inequalities that stem from disparities among students both with and without chronic health conditions. Marina Arvanitis from Northwestern University and Lurie Children’s Hospital of Chicago asked panelists if there was a field adjacent to health literacy that they would encourage their colleagues to explore. Manganello replied that she has been delving more into the educational technology field, along with information studies and computer science. Librarians and information literacy faculty at the University at Albany have worked with her on the Get Health’e project, providing different perspectives to achieve the same goal. Those different perspectives are really critical to her work, she said. Sarah Benes from Merrimack College and SHAPE America asked what kind of research needs to be done to move the needle on health education in schools. Kolbe replied that two types of research are critical. One is measur- ing health literacy, which is broad, integrated, and complex. The second type of research is trying to understand how the fields of public health and medicine can collaborate with the education field, conducting joint research that is jointly funded. 6  For more information, see https://ebooks.aappublications.org/content/school-health-­ policy-and-practice-7th-edition (accessed August 15, 2020). PREPUBLICATION COPY—Uncorrected Proofs

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PLACES 39 Lenhart, A., K. Purcell, A. Smith, and K. Zickhur. 2010. Social media and mobile internet use among teens and young adults. Washington, DC: Pew Research Center. https://www. issuelab.org/resources/11155/11155.pdf (accessed May 5, 2020). Mann, M. J., and D. K. Lohrmann. 2019. Addressing challenges to the reliable, large- scale implementation of effective school health education. Health Promotion Practice 20(6):834–844. doi: 10.1177/1524839919870196. McDaid, D. 2016. Investing in health literacy: What do we know about co-benefits to the edu­ cation sector of actions targeted at children and young people? Copenhagen, Denmark: World Health Organization Regional Office for Europe. NASBE (National Association of State Boards of Education). n.d. State policy database on school health. Alexandria, VA: NASBE. https://statepolicies.nasbe.org/health (accessed May 5, 2020). NASEM (National Academies of Sciences, Engineering, and Medicine). 2019a. Applying lessons of optimal adolescent health to improve behavioral outcomes for youth: Public information-gathering session: Proceedings of a workshop—in brief. Washington, DC: The National Academies Press. NASEM. 2019b. Fostering healthy mental, emotional, and behavioral development in children and youth: A national agenda. Washington, DC: The National Academies Press. NASEM. 2019c. School success: An opportunity for population health: Proceedings of a workshop—in brief. Washington, DC: The National Academies Press. NCES (National Center for Education Statistics). 2011. Public elementary and secondary school student enrollment and staff counts from the common core of data, table 3, school year ­ 2010–11. https://nces.ed.gov/pubs2012/snf201011/tables/table_03.asp?referrer=report (accessed May 5, 2020). NCES. 2012. Number of public school districts and public and private elementary and sec­ ondary schools: Selected years, 1869–70 through 2010–11, table 98. https://nces.ed.gov/ programs/digest/d12/tables/dt12_098.asp (accessed May 5, 2020). NCES. 2017a. The condition of education 2017 at a glance. https://nces.ed.gov/ pubs2017/2017144_AtAGlance.pdf (accessed May 5, 2020). NCES. 2017b. Number of educational institutions, by level and control of institution: Selected years, 1980–81 through 2015–16, table 105.50. https://nces.ed.gov/programs/digest/d17/ tables/dt17_105.50.asp?current=yes (accessed May 5, 2020). NCES. 2019. Fast facts: Back to school statistics. https://nces.ed.gov/fastfacts/display. asp?id=372 (accessed May 5, 2020). NIEHS (National Institute of Environmental Health Sciences). 2019. Environmental health sci­ ence education. https://www.niehs.nih.gov/health/scied/index.cfm (accessed May 5, 2020). NIH (National Institutes of Health). 2016. NIH P–12 stem funding opportunities. Bethesda, MD: NIH. https://cadrek12.org/sites/default/files/NIH%20Presentation%20Slides.pdf (accessed May 5, 2020). NIH. n.d. NIH curriculum supplements. Bethesda, MD: NIH. https://science.education.nih. gov (accessed May 5, 2020). NRC (National Research Council). 2012. Climate change education in formal settings, K–14: A workshop summary. Washington, DC: The National Academies Press. NRC. 2016. Climate change education: Goals, audiences, and strategies: A workshop sum­ mary. Washington, DC: The National Academies Press. Park, E., and M. Kwon. 2018. Health-related internet use by children and adolescents: Sys- tematic review. Journal of Medical Internet Research 20(4):e120. doi: 10.2196/jmir.7731. Rideout, V., and M. B. Robb. 2019. The common sense census: Media use by tweens and teens, 2019. San Francisco, CA: Common Sense Media. PREPUBLICATION COPY—Uncorrected Proofs

40 DEVELOPING HEALTH LITERACY SKILLS IN CHILDREN AND YOUTH Tappe, M., K. Wilbur, S. Telljohann, and M. Jensen. 2009. Articulation of the national health education standards to support learning and healthy behaviors among students. Ameri­ can Journal of Health Education 40(4). Videto, D. M., and J. A. Dake. 2019. Promoting health literacy through defining and mea- suring quality school health education. Health Promotion Practice 20(6):824–833. doi: 10.1177/1524839919870194. PREPUBLICATION COPY—Uncorrected Proofs

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Young people develop health literacy skills in a variety of environments, facing critical thinking challenges about their health from school, home and family life, peers and social life, and online. To explore the development of health literacy skills in youth, the Roundtable on Health Literacy convened a workshop on November 19, 2019, in Washington, DC. Presenters at the workshop discussed factors relating to health literacy skills and ways to further develop those skills among youth from early childhood to young adulthood. This publication summarizes the presentation and discussion of the workshop.

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