2

The Personal Landscape

The workshop’s first panel session featured two presentations that provided an overview of the health literacy landscape from the perspective of older adults. To set the stage for the day’s discussions, Mary Ann Zimmerman, founding director of Silver Spring Village,¹ offered a personal perspective on how health literacy affects her interactions with the health care system as an older adult. Amy Chesser, assistant professor in the Division of Aging Studies in the Department of Public Health Sciences at Wichita State University, then reviewed what research has been found regarding health literacy and older adults. An open discussion moderated by Shannah Koss, president of Koss on Care, LLC, followed the two talks.

A PERSONAL PERSPECTIVE²

Introducing herself as the workshop’s “official old person,” Mary Ann Zimmerman began her presentation by noting that she is an only child who has no family caregivers whose parents taught her to be independent and not assume that anybody would take care of her. “That is something I still

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¹ Silver Spring Village is a nonprofit organization, the mission of which is to build a supportive network of neighbors helping neighbors remain in their homes as they age. Most of the Village service area encompasses the commercial core of Silver Spring, Maryland. For more information, see http://silverspringvillage.org/content.aspx?page_id=0&club_id=902719 (accessed June 18, 2018).

² This section is based on the presentation by Mary Ann Zimmerman, founding director of Silver Spring Village, and the statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.

have in my head and still try to practice,” said Zimmerman. One piece of taking care of herself, she added, was dealing with the importance of health care and health insurance. She also recalled how her parents were each other’s caregivers as they aged. Like many seniors, they wanted to age in place, which is what Zimmerman is trying to do today. Her parents were involved with their local Area Agency on Aging (AAA) programs in their hometown of Jackson, Michigan, and they were active in their community. As they were aging, her parents looked at the cost of assisted living facilities, which were rather new in those days, and concluded that they could stay in their home with the help of Michigan’s Region 2 AAA programs and other offerings in their community, and care for one another. For Zimmerman, the experience of watching her parents successfully age in their community was a prelude to her involvement with the village movement today.

After having spent the first half of her working life as a civil engineer, Zimmerman left the technical world and worked as an independent consultant on organizational development. Today, she lives near the metro station in downtown Silver Spring, a Washington, DC, suburb, which enables her to avoid using a car. When she transitioned from having a “regular” job as a civil engineer to be an independent consultant, getting health insurance was not easy, particularly because she had a preexisting condition. Today, she is on Medicare and supplemental insurance and considers herself generally healthy, aside from the fact that she is undergoing chemotherapy for inoperable colon cancer and has spinal stenosis, non-diabetic peripheral neuropathy, some osteoporosis, and glaucoma.

Looking back over the past 4 months, she has averaged seven or eight visits per month with her nine doctors and support staff, which she said requires spending a great deal of time in the health care system while trying to carry on with daily life. Her biggest frustration has been with the hospital system, which she said is nebulous in some ways. Not all of her doctors, for example, are part of the hospital system, and those that are not have some privileges, but not all, including access to the hospital’s electronic health record (EHR) system. “So, plenty of confusion, difficulty communicating, and duplication of effort,” said Zimmerman. Another seemingly trivial frustration has been that the hospital system had her listed under three different names—Mary Ann, which is her real name, along with Maryann, Mary A., and Maryanne—and the records for these different versions of herself were not connected. The solution, she said, was to go by her birthday and be assigned a number that linked the three incomplete EHRs regardless of how someone enters her name into the medical record.

Another frustration has been with support organizations. Two hospitals in the same health system, said Zimmerman, work with a different visiting nurse group, causing challenges. An issue arose when a new medical supply company bought the one that had been providing her with good service

for the infusion supplies that enable her to undergo most of her 48-hour chemotherapy regimen at home. The confusion that resulted when the supplier changed caused complications with her chemotherapy, but she and her health system are working on a solution. She noted that the EHR system and portals could help with service coordination, but instead, the multiple EHRs and portals vary in their functionality and ability to communicate. In addition, the information that she enters and that her staff and doctors enter do not always agree. Her solution has been to make hard copies of everything related to her conditions and care, but because those records now fill a couple of file drawers, she cannot bring everything in paper form to an appointment with one of her doctors.

A key solution to her issues has been her involvement with Silver Spring Village and the notetaking services it offers to help her deal with her own medical records and interactions with the medical system. Clinical staff have also been lifesavers by helping Zimmerman navigate through or around roadblocks. In particular, her primary care physician has served as a sounding board/second opinion and has helped lead her to the right places in the health care system and make good decisions. She also credited her specialists and their staffs for being open with her and helpful in dealing with various challenges in accessing the services and care she needs. To help her judge how well her clinicians help her, she asks herself four questions:

1. How well do the doctors and their staff communicate internally with other doctors and with her?
2. How well do they explain things and take follow-up actions? Can they find 5 extra minutes when something is not working right to help fix it or does she have to set another appointment?
3. How easy are they to contact?
4. What is the culture of their institution and the attitude of their supervisors in working with the patients and their goals?

Zimmerman said she has concluded that there is only so much extended family can do to help her—she does have relatives who live in other parts of the country—and that the same can probably be said for close family. She noted that it is easy to become overwhelmed by the extent of the interactions with the health care system. “I like to think my brain is usually functioning, and it is certainly there, but there is way too much information,” she said, referring to most of the materials she is given by her clinicians and the health care system. Often, she said, she can find information to clarify a confusing point, but then finding that information a second time can be a challenge. On the other hand, being asked the same question repeatedly at every clinical encounter can be equally frustrating. No matter how many

times she is asked what her parents died of some 25 years ago, the answer already recorded in her EHR is going to be that she does not remember.

Concluding her presentation, Zimmerman said that while she enjoys life 80 percent of the time, she does on occasion yell and scream out of frustration. While she considers herself independent, she acknowledges that her definition of “independent” has changed over time—what helps, she said, is that she has friends whom she trusts and who understand how she defines having a good life.

WHAT DO WE KNOW ABOUT HEALTH LITERACY AND OLDER ADULTS?³

To explain how she conceptualized research on health literacy and older adults, Amy Chesser said she first looked to the literature to see if there are solid definitions of health literacy and older adults. She then looked for and validated reliable survey or measuring instruments and health literacy interventions for older adults. Although there are at least 17 definitions of “health literacy” in the peer-reviewed literature (Sorensen et al., 2012), the definition she used was “The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (IOM, 2004, p. 4) because it seems to include the main constructs of the other definitions.

According to the 2003 National Assessment of Adult Literacy, only 3 percent of older adults were proficient with health literacy skills.⁴ Chesser said there are age-related changes that contribute to the decline of health literacy over time, including a decline in cognitive abilities, the development of physical impairments such as hearing and vision loss, psychosocial issues, and a sense of embarrassment and shame. The good news, she said, is that she and some colleagues are hoping to collaborate and create information about health literacy at the population level. The Health Literacy Regional Network to which she belongs started with investigators in Arkansas, Kansas, Missouri, and Nebraska and has since spread to Georgia, Iowa, Kentucky, Minnesota, and Wisconsin. Chesser and her collaborators have worked with the Centers for Disease Control and Prevention to develop a three-question screener for health literacy that is available for all states as part of the Behavioral Risk Factor Surveillance System (BRFSS) survey. Survey results from Kansas in 2014 found that 31.4 percent of the state’s

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³ This section is based on the presentation by Amy Chesser, assistant professor in the Division of Aging Studies at Wichita State University, and the statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.

⁴ For more information, see nces.ed.gov/naal (accessed April 2, 2018).

residents had high health literacy, 61.1 percent had moderate health literacy, and 7.5 percent had low health literacy.

Older adults, said Chesser, are typically grouped together into a category of 65 years and older, a number set arbitrarily by researchers that has increased over the years from 60 to 62 and now 65. Several investigators have begun dividing older adults into two groups, each containing three subgroups: the young-old (ages 60 to 69), middle-old (ages 70 to 79), and very old (ages 80 and older) (Forman et al., 1992); or the young-old (ages 65 to 74), middle-old (ages 75 to 84), and oldest-old (ages 85 and older) (Zizza et al., 2009). There are also a variety of measuring tools for health literacy available. Typically, she said, people use the Rapid Estimate of Adult Literacy in Medicine (REALM), Test of Functional Health Literacy in Adults (TOFHLA), and Short Test of Functional Health Literacy in Adults (S-TOFHLA) for measuring health literacy in older adults. One tool that is gaining recognition as a close proxy for health literacy is the Single Item Screener, which asks how confident people are in filling out medical forms by themselves (Morris et al., 2006).

Chesser noted that as of 2014, there were no studies in the literature that reported validating any tool for assessing health literacy in older adults (Chesser et al., 2016). She and her colleagues used the Single Item Screener and S-TOFHLA to see how they compared and had mixed results, though the study included only 69 individuals. “Validation and standardization of tools could be key for integrated health literacy screening in the primary care setting,” she said.

Merriam-Webster’s Dictionary defines ageism as prejudice of discrimination against a particular age group and especially the elderly, and Chesser used this definition to search PubMed for U.S. studies on ageism. Of the 38 articles she and her colleagues found, the largest number dealt with teaching ageism to or assessing ageism for nursing, physical therapy, and medical students. A second, much smaller grouping discussed adults discriminating against older adults. A third group, which Chesser said she was most curious about, examined within-group ageism among older adults, and when she delved into this literature, she found it was mostly about death theory of some sort. The bottom line here, she said, is that the field of health literacy and ageism is wide open for research.

Recently, Chesser and her team completed a pilot study on ageism and knowledge to investigate whether a relationship exists between the level of knowledge of aging and ageist attitudes. The study recruited a convenience sample of 123 students enrolled at Wichita State University and used two reliable and validated tools called the Fraboni Scale of Ageism and the Palmore Facts on Aging Quiz. The mostly female, mostly white student participants, more than half of whom were seniors in undergraduate studies, had an overall low score on knowledge, but an overall neutral attitude

toward older adults. “Our results indicated a significant negative relationship between knowledge and ageism,” adding that greater knowledge about aging correlated with positive attitudes about the subject and that attitudes grew even more positive as the age of the surveyed students increased.

Chesser referred to what she called a landmark study from 2000 that administered the S-TOFHLA and Mini Mental Status Exam, a measure of cognition, on a sample of more than 2,000 participants (Baker et al., 2002). The important finding from this study was that the S-TOFHLA scores declined for every year of increase in age. Even after adjusting the results for scores on the Mini Mental Status Exam, health literacy decreased with every increased year in age. Differences in newspaper reading frequency, visual acuity, chronic medical conditions, and health status did not explain the lower literacy of older participants, Chesser added.

She and her colleagues at Wichita State have conducted two studies in this area. The first study used BRFSS data on cognition collected by the State of Kansas Health Department and a three-question screening tool for health literacy. “What we found was that high health literacy or moderate health literacy after the age of 65 decreases with each subsequent year of life,” said Chesser, confirming the results of the study she had just mentioned. Cognitive decline was among the single most important predictors of health literacy in older adults, she added. Her team also updated its systematic literature review (Kopera-Frye, 2016) and found 1 textbook and 125 published articles (see Table 2-1) that contained the terms “health literacy” and either “older adults,” “elderly,” “oldest-old,” or “geriatrics.” None of the identified publications included the term “oldest-old,” and only 29 came from the United States. After perusing each of the articles, only 20 studies included adults ages 65 and older. Of those, further screening eliminated another 10 articles from consideration.

TABLE 2-1 Results of a Literature Review on Health Literacy and Older Adults

^a Brougham, 2009.

SOURCE: Adapted from a presentation by Amy Chesser at the workshop on Health Literacy and Older Adults on March 13, 2018.

Of the 10 articles remaining, none tested interventions with participants over age 65, and none broke the analysis into the three groups for older adults. Most of the articles that passed practical and methodological screening were assessment studies, said Chesser. One case study (Cutilli and Schaefer, 2011) did test an intervention in a geriatric population, she added. As a final note, she said her team found more than 190,000 articles on health literacy. “If you look at the health literacy in older adults in comparison to health literacy in general, there is a great deal of work to be done,” she said.

DISCUSSION

Koss began the discussion by asking Zimmerman and Chesser to talk about the one thing they would change about the older adult communication experience with health care and the community. Zimmerman said that automated phone systems with long and multiple menus of buttons to push and long wait times before reaching a live human are a particularly vexing problem for her. Chesser, from her experience helping her older parents navigate their way through the health system, wished that health care providers would slow down when talking to older adults and meet the patients where they are, not where the provider is.

Koss then asked if there are models for bringing the range of perspectives in the community and health care system together, and if there is a need to balance a community model and medical model perspective. Zimmerman replied that for her, no one size fits all, particularly regarding the use of big data. When big data are used today, they appear to make broader generalizations about care rather than to hone in on the needs of the individual and fine tune care that addresses individual differences. On the community side, she noted that the primary focus of the village movement is to help neighbors age in place. By doing that, she said, the village model helps reduce resource needs and costs in other areas. A model Chesser said she finds attractive is the patient-centered medical home model that integrates patient-centered medical neighborhoods and community services for older adults. In her mind, combining that model with a health literate health care organization would have the potential to optimize services for older adults.

Commenting on Zimmerman’s emphasis on remaining independent, Catina O’Leary from Health Literacy Media said she appreciated the connections Zimmerman made among health literacy, empowerment, and independence. O’Leary then asked Chesser if she had any ideas for promising interventions based on knowing that cognitive decline drives much of the health literacy challenges for older adults. Chesser said the key in her mind is for clinicians to slow down when they are providing information, even when using universal precautions or teach back. Having clear communica-

tion at the pace of the person rather than just moving through information quickly would, in her opinion, help compensate for cognitive decline. Zimmerman commented that the social workers she deals with, such as those at the infusion center where she receives part of her chemotherapy, are good at working at the individual’s pace and connecting with each person by listening to and learning about what is important to each individual.

Kim Parson from Humana asked Zimmerman how she identifies trusted sources of health information. Zimmerman replied that her primary care physician has been a major source of information, in part because he likes to understand a wide range of subjects. She explained that her primary care physician knows she likes to read, and he refers her to sources of information that he knows she will be able to understand. He is also available almost any time of the day by phone or email, which she values greatly. She noted that she trusts her doctors as sources for information because they talk to each other and talk to her in understandable English. Other trusted sources of information for her have been the chemotherapy center, the National Cancer Institute, and several professional organizations. For dietary information, she uses Google.

Michael Wolf from the Feinberg School of Medicine at Northwestern University said he and his colleagues have been conducting a cohort study for the past 10 years on adults who were 55 at the start of the study. This study has focused on how older adults perform real-world skills rather than how well they perform on one of the standardized tests, such as TOFHLA. The goal of this project, said Wolf, is to study both what happens to health literacy skills with age and what people do to compensate for any diminished skills, particularly as their cognition becomes distracted by dealing with multiple chronic conditions and the various physical challenges associated with aging. Given what he has observed, he does not believe that teach back or communication skills training will help, and that it will be necessary to leverage technology in some way to help communicate more effectively with older adults. “We need to figure out how to integrate or have interoperability among health care systems and health communication tools,” said Wolf.

Zimmerman responded that one thing she has found immensely helpful is a notetaking service that Silver Spring Village offers. It is a non-professional service, although the notetakers do receive training. A notetaker accompanies an individual to a health care appointment. Not only does this service provide Zimmerman with a written recap of what was discussed at the appointment, but it also helps her prepare to meet with the doctor, to figure out ahead of time what she wants to discuss with her physician, and to commit that information to paper. This process, she said, has made meetings with her physicians more productive. Chesser said she would like to see the EHR contain relevant links to trusted sources of

information that an individual could go to after a clinical visit and learn more about what was said at the visit.

Bernard Rosof from Quality in Health Care Advisory Group remarked that the social determinants of health—education, housing, transportation, food, neighborhood, and community resources—influence health literacy and may be more important than the clinical services that are delivered to the health of older adults. Zimmerman replied that access to assorted services in the community can help individuals interact more effectively with the health care system and get the information they need. Chesser agreed that the items on the list Rosof mentioned, what she calls life, are more important than a clinical encounter, but how to measure their effect on health literacy is a challenge in that it would require community research, longitudinal studies, and even community-based participatory research. “All of those things that take dollars and they take extra planning and you do not have a captured cohort of any kind,” said Chesser. That said, she noted that she thinks it is more important to measure the effect of life than to measure the effect of the clinical encounter. Stephen Thomas, professor of health services administration and director of the Maryland Center for Health Equity at the University of Maryland, College Park, School of Public Health, suggested that another factor may be playing a role in communication issues facing older adults: empathy decline on the part of clinicians. In light of this, he emphasized that “all the burden cannot be placed on the patient and the neighborhoods in which they live.”

Rima Rudd from the Harvard T.H. Chan School of Public Health challenged the notion that cognitive decline is the strongest predictor of health literacy. She noted that the first study that linked cognitive decline to literacy (Baker et al., 2000) was flawed in that it timed people’s responses. When elders took the TOFHLA instrument untimed, they did much better, she said. “There are mitigating issues and I would just be very slow in absolutely linking cognitive decline to lower health literacy,” said Rudd. Koss added that she has observed the same when assessing young adults with attention deficit hyperactivity disorder.

Linda Harris from the Division of Health Communication and eHealth at the Office of Disease Prevention and Health Promotion asked Zimmerman if there are questions that her providers should be asking her to help them prepare to work and communicate more efficiently and effectively with her. Zimmerman replied that her doctors have spent time trying to understand what is important to her and what she wants to get out of her treatment. She noted that her physicians have been good about not using overly technical terms with her and referring her to health literate information that she might find useful. They have also been doing their own evaluation, by listening to her, of how much information at what level of technical detail she wants and adapting their communications based on those observations. She

again mentioned the notetaker who accompanies her and said the notetaker helps ensure that she and her doctors are communicating effectively.

Cindy Brach from the Agency for Healthcare Research and Quality noted that she and a colleague, Cynthia Baur, director of the Horowitz Center for Health Literacy at the University of Maryland School of Public Health, created an issue brief on health literacy that did break down the population over age 75. In the 65- to 75-year-old category, 23 percent of the individuals surveyed scored in the “below basic” category and 28 percent were in the “basic” category. In the older than 75 group, 39 percent scored in the “below basic” group and 31 percent fell in the “basic” category. “I get very disheartened because we have talked in the roundtable about the mismatch between the demands and the skills, and I think in this population it is just so striking how far we are from making those match,” said Brach. She added that organizations such as Silver Spring Village represent a way of filling that gap between demands and skills with an array of volunteers. Zimmerman responded that Silver Spring Village decided to be driven by volunteers, but there is some concern within this organization that the needs of the village members will outpace the ability to meet those needs as the members age. That said, she suspects that technology will play a bigger role in providing services in the future given that the 50-year-old members are much more comfortable with technology than are older members such as herself.

Anthony Sarmiento, president of Silver Spring Village, noted there are 250 to 300 similar villages around the country that are part of the Village to Village Network. He added that there is tremendous variation among them in terms of organization, capacity, and number of members. What they all share is the support they provide for older adults that helps them remain in place in their communities and that they rely, at least in part, on member dues.⁵ Given the latter, each village’s ability to serve its members indicates the cumulative disadvantage or advantage of various neighborhoods. The villages, he said, are largely white and middle class, with fewer villages in rural communities or disadvantaged neighborhoods. One challenge facing the Village to Village Network is whether it can sustain the villages in communities in which the members are either dispersed or have fewer resources.

Sarmiento then noted that the FrameWorks Institute has been doing research and published three reports emphasizing the importance of challenging the internalized ageism among older adults themselves (Lindland et al., 2015; O’Neil and Haydon, 2015; Sweetland et al., 2017). Considering this body of work and other reports, like the Organisation for Economic Co-operation and Development’s Programme for the International Assess-

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⁵ For more information about the Village to Village Network and its operations, see www.vtvnetwork.org (accessed June 18, 2018).

ment for Adult Competencies’ Survey of Adult Skills, he wondered if this type of research could inform work on health literacy in older adults (Paccagnella, 2016). He added that despite the advances in knowledge that such research has produced, adult education programs struggle to best serve older adults.

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