The last portion of the workshop provided the participants and roundtable members with the opportunity to reflect on the day’s presentations. First, Rima Rudd, senior lecturer on health literacy, education, and policy at the Harvard T.H. Chan School of Public Health, moderated a discussion with four panelists: Z. Colette Edwards, national medical director for Associate Health and Well-Being at Humana; Susan D. Goodman, author of the Acting Our Age: Women’s Lives at 85+ blog;1 Yolanda Taylor Brignoni, strategic communications director at AARP; and Mary Ann Zimmerman, who spoke in the workshop’s first session. This was followed by an open discussion with the workshop participants. The workshop concluded with the roundtable members providing their thoughts on the day’s proceedings.
Rima Rudd began this session by reminding the workshop that the literacy and numeracy skills of older adults in all industrialized nations are lower than those of working adults and that there are health consequences
2 This section is based on the discussion moderated by Rima Rudd, senior lecturer on health literacy, education, and policy at the Harvard T.H. Chan School of Public Health, and among the speakers Z. Colette Edwards, national medical director for Associate Health and Well-Being at Humana; Susan D. Goodman, author of the Acting Our Age: Women’s Lives at 85+ blog; Yolanda Taylor Brignoni, strategic communications director at AARP; and 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.
to limited literacy. These consequences, she said, are well documented regarding health promotion, disease prevention, health care management, disease management, decision making, and other aspects of health. Research has also identified the multiple physical, social, emotional, and cognitive changes that take place with aging. Rudd said,
However, what we do not know quite as well and what we have not researched quite as well, are the shifting landscapes, the physical and social and normative environments that we, as older adults, are expected to navigate regarding new territories, new languages, new decisions, new devices, and new technologies.
As a member of the planning committee for this workshop, Rudd explained that the planning group used the metaphor of multiple landscapes to shape the day’s discussions. “We highlighted the personal landscape, the landscape of the family, of the community, and of health institutions,” she said.
In so doing, we wanted to draw attention to how health literacy could enhance the experience of older adults as they navigate not only the pathways within health institutions and health services, but also the social normative structures that influence our everyday lives, that influence how and where we live, how and where we die, our interactions with others and with other institutions, what the silences are, what we are expected to keep silent about, and what we are expected to talk about.
Rudd noted the importance of determining how health literacy can enhance, modify, and change these structures so the system becomes easier to navigate. To her, the main issue is not to change the older adult and figure out how to enhance the skills of the older adult, though those are important and not to be dismissed. Rudd said,
The emphasis is on how to keep our eye on the journey, how we keep our eye on the terrain, how we keep our eye on the environment, and what we can do to make modifications to make this journey a little bit more pleasant, a little easier, and something that is more joyous to navigate in some ways.
With that as her introduction to the session, Rudd asked the four panelists to comment on how they have gained insights into the experience of older adults. Edwards replied that she has gained insights from varied settings, including her 7 years as a practicing physician, as the caregiver for an elderly aunt who lived to be 100 years old and for her parents, and in her current position, where she focuses on the associates and their dependents
covered by Humana. She has also participated in the health disparities scholar program at the National Institutes of Health, led health disparities work for a previous employer, and conducted health and wellness coaching. “I have seen people in various settings and looked at the issues from a lot of different angles,” said Edwards.
Goodman said she has been a “boots-on-the-ground” person in several elder care situations during her lifetime. Over the past 3.5 years, writing for her blog, she has interviewed some 40 women ages 85 to 105. In speaking with these representatives of two generations of women who are aging positively and healthily, even in the face of serious chronic illness, she has gained a good perspective on how they manage their care in today’s complex health and long-term care environments. She noted that these women are part of a marginal group that does not often get the opportunity to sit and talk with someone for a few hours. “That has been my opportunity and it has been very rich and very enlightening, and I hope my readers feel that way as well,” said Goodman.
Taylor Brignoni said her job as strategic communications director for AARP is to make sure the organization is communicating in one voice about health across the 35 to 50 communication vehicles that AARP uses to deliver information that its 38 million members can use to make solid health decisions. Prior to her current job, she was a health reporter for many years.
Zimmerman said she has gained insights and knowledge through the many connections to the larger community that she has made in her role with Silver Spring Village. The value of those connections has been reducing isolation, she said, and creating a group of people who all live within a 2-square-mile area and yet had never met each other. “In developing this community, I had things I thought I would learn and get out of it, but I have also gained friendships and trust,” said Zimmerman. “We have learned from each other in ways I had not expected and find I really needed.” Another community she has joined includes the regular patrons at the two coffee shops and one restaurant within a two-block radius of her home. The members of these ad hoc groups talk with one another about the concerns they have about aging and pass around ideas for things to investigate, she said. A third community includes the people who live in her 500-unit apartment building. “It is a mixture of anything one could want,” she said, adding that there is a valuable form of health literacy that has come for all those community groups.
Next, Rudd asked the panelists to note any major insights they gleaned from the day’s discussions. Zimmerman applauded Thomas’s call to move into a fourth generation of disparities research that moves beyond theory and into action. “Theory is absolutely needed, but I believe we are at the point of needing to move to that next step of actually doing something,” she said.
What struck Taylor Brignoni was the need to think through what people need to get from the information they are being given and to not assume that people understand concepts such as co-payment and co-insurance or understand jargon. For her, introducing people to the language of health care and long-term care and helping them to understand that language is important for breaking down silos and building trust in these communities.
What struck Goodman was the discussion about ageism as it related to the different age groups among elders. U.S. society, she said, is fearful of aging, and making fun of wrinkles and sagging skin is thought to be funny. The stereotypes of older adults that she has seen are rigidity, crankiness, depressing and depressed, and unwilling to learn or move forward, and yet older adults can be extremely resilient and adaptable. She recounted that one older woman told her she said she would never use a walker, until she realized that she was sitting in her room all the time and would continue to do so unless she adapted to the reality of her physical condition. Goodman said she has been impressed by the openness older adults have to learning new things and adopting technology. “They are on Facebook, FaceTiming with their grandkids, and using Uber and Lyft,” she said. “They understand that the world has a new language, and some are able and willing to venture in.”
Goodman said she has also been impressed with how many older adults are at peace with their lives, not filled with regret or anger, and happy and blessed to be where they are today despite having experienced hardships and setbacks along the way. The one thing that the workshop did not address was that many family caregivers are themselves older and have their own health issues.
Edwards said the day’s discussions drove home something she has believed firmly for many years: the importance of really listening to people. “Despite all the technology and all the advances, it still comes down to people,” said Edwards. “Every time we try to take people out of the picture, it does not work out well and everybody seems surprised.” She also noted that focusing on health literacy and health disparities for a sub-segment of the population typically results in improvements for everyone, because so often the underlying root causes reflect systemic issues. One striking observation she has made regarding an example of ageism was the tendency of clinicians to speak to her when she accompanied her aunt to an appointment even though her aunt had no cognitive issues at all and was fully aware of what the clinician was saying. “I think there are factors within the system and our culture that often lead to a certain point or age at which the system often stops seeing people and what their capabilities are,” said Edwards. “Today has further reaffirmed the importance of addressing that issue.”
Rudd’s third request of the panelists was for them to draw from their insights and offer some ideas of what needs attention regarding health
literacy and how the lessons learned at the workshop can translate into actions within health care institutions and within public health systems. Edwards said one action she and her colleagues at Humana are going to take is create a care advocacy boot camp to help patients and caregivers recognize the importance of being assertive as they navigate the health care landscape and the power they have to drive changes both one person at a time and in the system over time. Noting that she writes a blog called Be a Health Care Rebel, she said every person is the expert about themselves, and that no one else is ever going to be inside each person’s body or mind. “Trust your gut, and if something does not make sense, it probably does not make sense no matter how many degrees someone has behind their name,” said Edwards. She urged the audience to avoid being distracted from their truth by the big words they may hear from a health care professional. It is important to gain the skills to have confidence to ask questions because that might literally save one’s life or the life of a loved one. “That is the one thing we are going to be working on, general advocacy in the health care system,” she said. One example of the type of confident and informed advocacy she has in mind is how parents become transformed when they are advocating for their children when dealing with the health care system.
Goodman thinks about how storytelling could be put to effective use, something that several organizations such as the Alzheimer’s Association use to help nursing home and assisted living facility staff find out about those in their care so that each person becomes someone real. Needing to be heard and seen by a medical provider is important for an older adult, she said. To make that point, she told the story of an 86-year-old African American woman who was having trouble with swelling in her hands and feet. The first three times she went to the doctor she was told to go home and take a Tylenol. The fourth time, she announced she was not going to leave the office until the doctor ordered some tests to find out what was wrong. It turned out that she had rheumatoid arthritis, for which she is now receiving treatment. The woman told Goodman later that she had grown up in the segregated South and that her health was not considered important there, either. What made this story more interesting was that this woman’s daughter, who accompanied her on these visits, was a doctor and still nobody was focusing on the patient or taking the time to discover that this “old woman” was responsible for diversifying the book collection at Amherst College library. “She was a lot more than swollen hands and feet,” said Goodman.
Goodman also noted that when she worked in subsidized senior housing in Boston, there was an exciting program at Tufts University School of Medicine that would send medical students into these housing developments one afternoon per week for an entire semester. Their mission, Goodman explained, was to learn to listen. Goodman said,
There was such an opportunity for the future doctor and the residents to get to know each other, and at the final good-bye celebration, there were several students who stood up and said, “I was afraid to come here. You guys rock and I want to be a geriatrician.” That is what I think we need to look at.
Noting this program’s similarity to Thomas’s barbershop and beauty salon initiative, she said these are the type of programs needed to give young clinicians the experience of relating one on one to their patients.
Taylor Brignoni focused on the messages about the importance of building trust and breaking down silos that she heard about throughout the day. She echoed Edwards’s call for reinforcing the importance and positive impact of getting to really know the whole person rather than the more narrow context of a collection of diagnoses. “Unless you really get to know those patients, you will find that the system can relegate them into a category of symptoms or ailments,” she said. Recalling the story that Super told earlier in the day about the woman who was not going to her medical appointments because she needed to be carried down three flights of stairs to get to those appointments, Taylor Brignoni said this woman’s health care providers would never know that about her unless they break down silos and get to know her. Establishing trust, she said, allows a person to feel safe enough to tell the provider about the challenges they face without feeling that they will be judged. In her opinion, many health literacy barriers people face would be lowered if they felt they could trust their providers to ask questions and if the providers went into these communities to form the type of connections that doctors used to have with their patients and communities. Taylor Brignoni noted that while technology is great, there will always be human error, and so trust once again becomes an important issue.
Zimmerman said she agreed with everything the other panelists said, particularly about the importance of building trust and listening. She recounted how in 2016 she had a nurse and a physical therapist who would come to her apartment and talk to her and learn about her particular needs. The nurse focused on what she could provide knowing that Zimmerman had long-term care insurance, while the physical therapist concluded that Zimmerman might be injured on one of her walks to get coffee if she continued using the flimsy walker she had. “I had not realized before I started the conversation with these two that we patients know what we want,” said Zimmerman, who added that she could not have articulated her needs well enough except for the fact that these two professionals listened to her and provided feedback. “That interaction got me to be able to define and prioritize what I needed,” she said.
Rudd commented on the interesting balances among an emphasis on advocacy, on telling and collecting stories, and on making the invisible vis-
ible by listening that seemed to be resonating with the panelists. She then asked them for any additional insights they wanted to pass along before opening the discussion to the rest of the workshop. Edwards replied it is important to consider the effects of caring for an older adult on the health of the caregiver so the clinician does not end up treating two people. Rudd responded that intergenerational caring can be a blessing as well as a burden by providing an opportunity for the youngest generation—the grandchildren of the older adult—to observe, learn, and have compassion.
Goodman said the day’s discussions left her feeling hopeful because the workshop participants know what needs to happen. Her hope is that it will not take long for those in the medical community to realize they need the time to just sit together with their patients, get to know each other a little bit, see beyond the symptoms, and have the opportunity to see individuals as whole persons and truly assist them. She noted that she has had the opportunity because of her blog. Taylor Brignoni said she would like to see more attention paid to how the health system and communities can support the family caregiver because of the great deal of stress they are under and the critical role they play in providing care for older adults. She noted that AARP has a caregivers’ program, and caregivers are often asking what they can do to help themselves deal with the stress of caring for a parent or other older adult and the guilt of feeling overwhelmed. Zimmerman offered the idea of bringing in the community to help with various tasks and to relieve the caregiver on occasion.
Kim Parson from Humana asked the panelists to comment on the effect that depression has on the lives of older adults and caregivers. Goodman said the older adults she sees who have insights about depression tend to seek treatment and not let it have too big of an effect on their lives, but she suspects many more people have depression and are not saying anything. As a result, their caregivers and providers are not recognizing the symptoms either. Edwards added that a high percentage of older adults will develop chronic conditions as they age, which then lends itself to being depressed and, in turn, affects how well those individuals can take care of themselves and focus on doing the things they need to do to be healthy.
Another repercussion of depression, Edwards pointed out, is that someone who has had a heart attack and is depressed is much more likely to have a second heart attack. She also noted that someone who is lonely is more likely to be depressed, which causes them to withdraw from life and be even more lonely. The challenge, said Edwards, is to have conversations with older adults that can tease out the symptoms of depression. Simply asking someone if they are depressed is usually not a fruitful approach, she
said. Rudd said that literacy feeds into this problem because limited literacy usually translates into limited vocabulary, and vocabulary is needed to express feelings that are not concrete. “The mixture of normative behavior and limited literacy skills through limited vocabulary perhaps can really exacerbate the problem of expressing your needs and expressing your feelings,” said Rudd. Edwards added that limited health literacy plays an outsized role just at a time when life is getting increasingly complicated, and Rudd wondered what a health literacy focus can do to help mitigate these issues and increase access to care. Koss referred to the Plan, Do, Study, Act model of how to evolve change that could be particularly applicable to community, family, and caregivers.
Michael Villaire from the Institute for Healthcare Advancement told the workshop about a program his organization is running together with a broad-based collaborative of faith-based, city, nonprofit, and for-profit organizations. This program has promotoras—community workers—going into their communities, finding isolated seniors, and bringing them back into the system. The promotoras conduct a series of interviews and work with older adults to try to reconnect them to their communities so they can use various services. In addition, they hold a senior week, with a senior health fair and senior prom to promote inclusion of seniors in their communities.
Villaire also noted that his nonprofit has written a series of self-help health books at the third- to fifth-grade levels, one of which is What to Do for Senior Health. It comes with a resource kit that contains an easy-to-read advance directive form; an exercise video that helps older adults improve their strength, balance, and flexibility as a means of reducing falls; and a home safety assessment for fall risks. His team has also partnered with service organizations and Home Depot to go into homes to address fall hazards and install grab bars and the like. He has partnered with a dual-eligible managed care organization to conduct a randomized controlled trial to see if this intervention does reduce the incidence of falls.
Laurie Myers from Merck Sharp & Dohme Corp. noted that caregivers themselves may have limited knowledge, and she wondered what the field of health literacy could do to help support caregivers as a means of improving prevention and wellness efforts. Goodman said the important thing is to recognize, respect, and understand what the caregiver is going through when caring for an older adult and provide some form of community for them to get together and voice their frustrations with others in the same situation. Taylor Brignoni said AARP, as part of its caregiving experience program, has created a series of videos to provide step-by-step instructions that can help caregivers deal with specific situations, such as administering medication or moving a bed-ridden person to prevent him or her from developing bedsores.
I think while the community is a huge part, and that you definitely need to make sure that the caregiver can ask those questions and feel like there is a safe space to have that kind of conversation, it is important to give them the skills and the tools they need so they are not as stressed out.
Lisa Fitzpatrick from the DC Department of Health Care Finance recounted how an elderly woman she met told her she had prediabetes and asked her what that meant; the woman did not know that Fitzpatrick is a doctor. When Fitzpatrick asked this woman why she had not asked her doctor that question, the woman replied that he is a good doctor, but very busy, and she did not want to bother him. This encounter prompted Fitzpatrick to wonder how community members can become more engaged with their older adult neighbors and be a source of information or a conduit to trustworthy sources of information.
Fitzpatrick noted that she is cynical about the prospect of practicing clinicians changing their behaviors and suggested the emphasis should be placed on clinicians in the pipeline. Zimmerman replied that as she has gotten to know her established physicians and become more comfortable asking them questions that they start treating her more as an equal, and the conversations improve. Fitzpatrick suggested that Zimmerman got lucky and that her doctors are outliers. Edwards remarked that there is a huge opportunity to work with the American Association of Medical Colleges to embed better practices and community involvement into medical education from the very beginning so that they become part and parcel of what a medical student or other health care professional learns and is expected to do.
Edwards also offered the possibility that changes in the reimbursement and health care financing system that emphasize outcomes will promote change. “When the focus is on having great outcomes, it becomes more difficult to have great outcomes if you have health literacy issues,” she said. In addition, she said,
the more you work on the health literacy of your patients, the more it feels like you are getting back to what you really wanted to do in terms of taking care of patients and bringing more joy into your life. Physicians are burning out because they are not getting those warm and fuzzy feelings because of everything else going on in the system.
Jay Duhig from AbbVie Inc. asked the panelists for ideas on how health literacy can encourage or incentivize other parts of the health care system, specifically manufacturers, to have a similar level of engagement and focus on older adults. Taylor Brignoni said that one of AARP’s focuses has been on trying to disrupt the medical products industry, to make sure these busi-
nesses see how much older adults spend and how, and if they design their products with that population in mind, it can benefit their bottom line. At the same time, AARP is connecting manufacturers with this target population to bring them into the development pipeline to serve as testers and members of focus groups.
Steven Rush from the UnitedHealth Group noted that the complex health care system gets more complex as people get sicker and older. “The cognitive burden that occurs throughout the entire process is magnified as we get sicker and we have less capability to process information,” said Rush. He noted the resource kits and books Villaire spoke about and the videos that Taylor Brignoni mentioned as the type of interventions the health literacy field has talked about for some time. He also applauded the workshop’s speakers for talking about shared decision making and making language more understandable, two other areas in which health literacy has been active for years.
Villaire said he wanted to flip the discussion to hear about engagement and volunteer opportunities for older adults that would enable them to connect with their communities. His organization, for example, gets older adults to read to children, and the American Association of Critical-Care Nurses has a program for bringing seniors into the neonatal intensive care unit to cuddle babies that need to be held to thrive. Zimmerman said that, in some ways, is the whole purpose of Silver Spring Village. “A lot of the members are volunteers for administrative things or direct services to other seniors,” she said. She also noted that as the village has evolved, it has increased the number of volunteer options in the broader community, including reading for children. Goodman noted that such opportunities can give older adults a sense of purpose and importance.
Larry Smith from Northwell Health said that cognitive decline is the number one reason why an older adult will no longer be health literate. Combining cognitive decline with serious chronic illness makes it even more likely that health literacy will decline. Given that, he asked,
Where is the role of clear-cut advance directive discussions, documentation, making sure that the caregiver who ultimately may be the health care proxy understands that their job is to decide based on that person’s values, not their own values? If we do not get advance directives while the person is still capable of being health literate, it is too late.
Zimmerman said that helping with advance directives and estate planning were among the first services that Silver Spring Village offered, and it still provides them every couple of months. She added that these programs are open to the broader community, not just village members. Edwards said she has started seeing groups pop up to address that issue. The challenge,
she said, is getting people to think about advance directives and estate planning at a time when it is not a concern for most people. She is encouraged, though, by the increasing number of health care organizations that are starting to ask their members if they have advance directives on file and providing help for those who do not.
Bernard Rosof from Quality HealthCare Advisory Group asked Smith how Northwell, with its innovative educational programs with no real classes, addresses the issue he raised. “We teach communication skills using a very high proportion of standardized patients with videotape review,” said Smith, “and asking people for advance directives is one of the standard exercises that every student does.” His program also gets physicians, when they have those conversations with their patients, to ask permission for the students to be in the room and hear how a physician with a good relationship with a patient has that conversation.
A roundtable tradition is to finish each workshop with each member identifying one or two key messages they heard during the day. Terri Ann Parnell from Health Literacy Partners said the key points she would take from the workshop were the important roles that advocacy, empathy, building relationships, incorporating the social determinants of health, and broadening the view of health literacy play when dealing with older adults. In her opinion, the social determinants of health are more important than some of the medical indicators that are studied. She also noted that the multigenerational nature of caring for older adults in the United States offers wonderful opportunities for learning to span these generations.
Christopher Trudeau from the University of Arkansas for Medical Sciences commented that as an only child, the workshop today made him think about the caregiving he is going to be giving to his parents and that he will need support and training to be that caregiver given that he knows how to provide some but not all aspects of the care they will likely need. He said he was interested to hear about caregiving boot camps as a way to not only train people regarding potential health care roles, but also train them on their responsibilities and obligations as a caregiver. He noted that in the legal world in which he works, there are some protections at the state level to make sure that caregivers are doing their jobs well, but not at the caregiver level when the person being cared for is still mentally competent. He was also struck by the importance of trust and the need to combine trust in the health system with caregiving. “Would that mean training caregivers in the barbershop?” he asked. His final takeaway concerned the intersection of the medical and legal worlds regarding older adults and the issues involved with advance directives and estate planning.
Rush said he was not aware of the sensible reclassification of older adults into young-old, middle-old, and old-old. In his opinion, that reclassification should help inform future research on older Americans. His other key message was that the workshop once again reiterated how important it was to convey information to patients and caregivers in a manner that increases understanding of how to best provide care for older adults.
Catina O’Leary from Health Literacy Media was struck by the fact that she will not only be a caregiver for a parent as an only child, but would simultaneously be a caregiver for her children. At the same time, she realized that everyone at the workshop was in a similar boat. “We are all struggling with what this means for me as a person and then what this means for our work and how we situate this among the big life problems,” said O’Leary. “We have to get serious about this and do more than we are doing. That is important. It crosses both the personal and professional.” The comments that speakers made about resilience and adaptability were important because it is too easy to think about burdens and deficits and forget that people are remarkably resilient and adaptable. Given that, it will be important to figure out how to best help older adults and their caregivers to be their strongest, she said.
The issue of trust and culture are topics that have come up in multiple roundtable workshops over the past 2 years, O’Leary noted, as has the subject of cognitive decline. Regarding the latter, she said, people can have problems with language and understanding what words mean and be experiencing physical and mental changes that affect understanding. She was intrigued by the fact that interventions are moving beyond the standard tools of health literacy and into the community, which to her raises the issue of treating people as a whole, of considering who they are, what they find important, and how they want to be treated, heard, and seen. “We can do all of that all the time if we bring our best selves to practice and we practice with them,” said O’Leary. “I think Mary Ann [Zimmerman] did a nice job reminding us that people know what they want and what they need and that they want to be partners in care, and they have the capacity to do so when we all show up together and recognize humanity in all kinds of spaces.”
The key idea that Earnestine Willis from the Medical College of Wisconsin gleaned from the workshop was that the aging process is heterogeneous. When she looks at this idea from the perspective of the individual, she can see that it is important to ensure that people continue to have a sense of purpose in their lives. The issue of distrust of the health system resonated with her because she sees that every day in the health system where she works. For her, this raises the question of whether health literacy alone can get people and communities past that distrust. She noted that in her role as an educator of health professionals, she sees that young people today understand their
role as an advocate for the people for whom they care. “It gives me hope that there is a generation of young people who see that their job goes beyond just doing tests and giving a diagnosis,” said Willis. “They can connect to the whole person.” Her final comment was that the disparities that she sees in communities remind her of the need to focus on building the type of village about which Zimmerman spoke. Too many people she sees in her practice have lost their village. “Neighborhood cohesion becomes a critical piece of us getting people back to health,” she said.
Picking up on Willis’s optimism about the current generation of students, Parson is hoping that this is a generation that does not see race and age when they start taking care of people and that this will change the way conversations occur. The day’s discussions also reinforced the importance of putting the individual at the center of care and of co-creating effective solutions to the challenges they face in getting care.
Myers was excited to hear the discussions about the role of the community in caring for and supporting individuals outside of the doctor’s office. She noted the significant role that insurers, pharmaceutical companies, pharmacists, and civil organizations should have in conversations about caring for the nation’s older adults and the obligation they have to participate in those conversations. She supported the idea of research that translates findings into action, which reminded her of the need to address diversity in clinical trials, not just in terms of race, ethnicity, and gender, but age, too, given the importance of understanding how medicines work differently across the age span. Myers also suggested that health literacy can serve as a potential approach to addressing community trust. Her final point was that the day served as a reminder to include the perspective of the caregivers of older adults when thinking about today’s emphasis on getting the input of patients into the drug development process.
Vanessa Simonds from Montana State University noted that the issues discussed at the workshop will affect her directly as her young-old parents start having health issues and start interacting with the health care system whose complexity will increase the demands on them. She added that she appreciated the attention to racism and rural issues, both of which affect her family and make the context of care more complex, and the attention to building trusted relationships by finding places where people feel safe and comfortable, which can help mitigate complexity.
Olayinka Shiyanbola from the University of Wisconsin–Madison School of Pharmacy said her important learnings were that patient-centered care cannot occur without health literacy, and there is a need to teach patients and help them build confidence to ask the right questions. The other key insight she gained was about the importance of connecting with the community and how going into the community seems to get health care professionals to talk in health literate terms naturally. For her, that is a lesson
that she will go back and incorporate in the way she teaches pharmacy students so that they realize that sometimes they need to get out into the community as a means of reinforcing the ability to communicate in a health literate manner.
Terry Davis from the Louisiana State University Health Sciences Center in Shreveport said she enjoyed hearing from a new group of people and forming new connections outside of the health literacy field. During the day, it struck her that consumer health-related technology is here to stay, so it is imperative to make it more user friendly for people like her who dislike patient portals and passwords.
Michael Wolf from the Northwestern University Feinberg School of Medicine agreed with Davis and said that opportunities are lost to work with certain technology tools because they are too complicated. The challenge, he said, is to determine how to harness some of these tools and modify some of these platforms so they will be useful and used by older adults. Wolf also appreciated the discussion on community and how community-based efforts may be able to help ameliorate the shortage of all levels of caregivers who can manage the multiple chronic conditions that older adults will experience. His one wish was that the workshop would have addressed how to fix a health system that is overly complex for the nation’s growing population of older adults.
Jennifer Dillaha from the Arkansas Department of Health said that one concern of hers is that many geriatric patients in the United States do not receive the standard of care because they are older and supposedly do not need that level of care. Even in the cases when attempts are made to give them appropriate care, the training most health care professionals receive in geriatric medicine is poor, and clinicians struggle with providing appropriate care for many of the illnesses and conditions that affect older adults. “We have a context in which the quality of care is poor and then you layer on top of that low health literacy, and it is really a distressing and concerning situation,” said Dillaha. Like other members of the roundtable, she also appreciated the emphasis on community-based services because that is where networks to support older adults and help them deal with low health literacy must develop to meet the growing demands that older adults are already placing on the nation’s health care system.
Duhig applauded the workshop’s emphasis on people’s experiences and how they tied into the evidence base and ongoing research. He also noted the challenge of making technology more accessible for older adults and his concern that failing to do so will have large-scale negative consequences as consumer-facing technology becomes more widely adopted by the health care system. In his view, little attention has been paid to the fact that the experience of interacting with technology is different from that of someone who has grown up with technology, and that difference will require
considering language, culture, and access when designing technology for older adults.
Nicole Holland from the Tufts University School of Dental Medicine was struck by the heterogeneity of older adults’ experiences of independence as they age and how their relationships with family and community change. Her other comment concerned the relationship between plain language and trust as it relates to the biases that come with race, culture, and age and what it means in terms of teaching students the best practices in health literacy.
For Villaire, health literacy is about removing barriers, leveling the playing field, and being as inclusive as possible. In that vein, what struck him was the issue of social isolation that was mentioned several times during the day and the fact that caring for older adults is not solely the responsibility of the health care system. Community is key, he said, because community can create an atmosphere of inclusion, conversation, and mentorship. Age, he said, is just a label and only one aspect of who a person is, and age should not be used to pigeonhole and exclude people.
Fitzpatrick said the most striking thing she heard was the need for disruption in the long-term care industry. She noted that when she worked in the Medicaid area, she thought constantly about disparities, but she never considered disparities outside of the Medicaid population. “We are at a time when there is disruption everywhere, but I do not see many people trying to disrupt this space in long-term care,” said Fitzpatrick. One concern that the day brought up for her was that technology has the potential to exacerbate health disparities, though it can also help reduce social isolation. She recounted how her father recently asked for a smartphone to replace his old flip phone because he felt disconnected from the rest of the family since he could not be part of group chats or receive pictures from the family. Now, though, the smartphone is giving him headaches because he is frustrated by its features. “I think there is more that we need to understand about technology in this population,” said Fitzpatrick. Her final point was to agree with the earlier comment that health literacy can address trust issues through its role in democratizing health information. “The reason for distrust in my experience is that we do not share the information, and we do not share it in a way that people can use it and understand it,” she said.
Rudd commented on topics the workshop did not address, particularly the issue of death and dying and how it is a taboo subject for discussion among so many Americans. “I think we need some way of making it easier in our society to talk about it,” said Rudd. In her opinion, health literacy, with its role in focusing on dignified conversations in which people feel free to ask questions and have the words to ask those questions, can help society develop the words to have those conversations.
After voicing her support for having the roundtable take on the end-of-life discussion in a future workshop, Linda Harris from the Office of Disease Prevention and Health Promotion said value-based care and payment, which were mentioned during the workshop, provide a great opportunity to invest in thinking about how to prepare the health care delivery system to incorporate health literacy into care delivery because health systems will be held responsible for something they do not know how to do yet, which is keep people healthy rather than treat them when they are sick. Health literacy can help build a market for user-friendly tools and conversations, and involve the community in the health care delivery system. The other point she made was about the notion of self-advocacy and how health literacy can help older adults and people with disabilities learn how to be self-advocates. She noted that children with disabilities learn how to advocate for themselves, and the lessons learned there should be used to help older adults learn self-advocacy.
Cindy Brach from the Agency for Healthcare Research and Quality said she heard some themes that the roundtable has focused on over the years, including the universality of limited health literacy and the multiple and exacerbated navigation challenges that people face when they get multiple chronic conditions, a common occurrence among the elderly. One thing the workshop did not address was some of the more acute problems this population faces, particularly regarding social determinants of health, such as housing. “In the elderly, housing and health care become overlapping and almost indistinguishable problems at the point where you cannot be independent and need support,” said Brach. She said she had expected to hear something about the dual-eligible population and perhaps social health maintenance organizations or new Medicare communities that are thinking about how people live, are housed, and receive care across the age continuum.
Brach then said the workshop owes a debt to Dr. Stephen Thomas for encouraging moral outrage. “If we are judging our society by how we treat the most vulnerable, then looking at the elderly as a population and particularly those at the more disadvantaged spectrum, we are not doing very well,” said Brach. She said she was also struck by the dichotomy of needing to talk to both the patient and the caregiver. She said,
I realize that while a health literacy practice is to encourage bringing a friend or family member to help you remember and ask questions, I do not think that there is guidance for health care professionals of how to incorporate those caregivers or friends and family members into the conversation.
She thought the roundtable might consider that problem and how it might be able to help that dynamic.
Gem Daus from the Health Resources and Services Administration said he was happy to learn about the village network, for he did not realize it was so formalized. He noted that the concept is prevalent in ethnic communities as a means of caring for themselves, albeit with varying degrees of success. It is important, he said, to have places where everyone knows everyone’s name, for those are the locations where people can communicate with one another and have conversations about health and social connections in a health literate manner.
Suzanne Bakken from Columbia University said from her perspective as a health informatician who works with populations in which health disparities are common, much of what was discussed at the workshop is intersectional in nature in that it occurs at the intersection of social determinants of health, health literacy, and age. Intersectionality, she said, is an important concept that leads to people being increasingly disadvantaged and requires creative solutions to address. She noted a project she has been involved with that has shown that technology-based interventions are more effective at triggering behavior change when they are combined with a human component. She commented, too, that social isolation is becoming like smoking in that its adverse effects among the elderly, many of whom are socially isolated, may be profound.
What she did not hear much about was technologies other than smartphone apps. She noted that a higher proportion of African Americans and Latinos use Twitter than do non-Hispanic whites. It is also a technology that older adults are using because of its similarity to text messaging. In fact, she has been studying how Latinos caring for older adults with dementia are using Twitter and believes these studies will provide interesting information about the content and structure of caregiving. One thing she has already learned is that two of the most overwhelming aspects of caring for an older adult with dementia in the Latino community are figuring out the financial logistics and how to deal with some of the symptoms of dementia.
Emma Andrews from Pfizer Inc. said she was struck by the role the community can play in addressing health disparities in clinical trials and communicating better about medications. Another takeaway she got was that although the health care enterprise is in the business of making and delivering medications that help prolong people’s lives, the elderly often feel dismissed by the health care system. She, too, reiterated the need to make technology accessible and understandable by older adults. On a personal note, she said she was born in Uganda and her parents have retired there, but she does not have to worry about who will help care for them there because the community members take care of one another at every point in life. What she takes from that is that it may be possible to use the principles of health literacy to make sure that from an early age, children realize that everyone is important and that just because someone is older does not
mean they should be dismissed. She noted that some countries in Europe are encouraging intergenerational living and even offering incentives to young adults to live in an elderly community. What they are seeing in these “arranged communities” is a positive change in behaviors and attitudes toward each other in both the young and the old.
Alicia Fernandez from the University of California, San Francisco, said that what struck her was that caring for an older parent or relative is hard under even the best circumstances and that society needs to place more value on the plain work of dressing, feeding, and caring for someone. “No amount of technology is going to change that and how most of that work is done by women, overwhelmingly by immigrants and poorly paid people who are themselves struggling with issues around the intersection of knowledge, literacy, and technology.” The day’s discussions, she said, made her want to see more models of how other countries care for older adults and how Medicaid came to pay for in-home support services so that she can start thinking about how to change the system.
Smith observed that it is often easier for families to cope with physical illness than cognitive decline, in his opinion. He noted that this is something he has observed throughout his career as a general internist: to him, this drives home the message that one patient is not like any others. “If we bundle them all into one lump, we will not actually make progress,” said Smith.
Michael McKee from the University of Michigan Medical School spoke about how fragmentation of the U.S. health care system makes it difficult for patients and providers to connect. In his opinion, the medical profession needs to go back to its roots and be better at taking a patient’s history as a means of communicating with patients and forming a good connection. As social animals, humans need connection. Technology can be a facilitator of that, but it can also be a barrier.
Annlouise Assaf from Pfizer Inc. noted how her extremely active 90-year-old mother broke her leg on vacation and is now experiencing much of what was discussed today in terms of relying on others to care for her and spend time with her. Assaf said her mother complains that she is lonely, even though Assaf, her sister, and the grandchildren spend more time with her than before her injury, probably because of her loss of independence. She recounted how her mother complains that her doctors do not see her and do not listen to her because she is old. When Assaf accompanied her mother to an appointment, the doctor started talking to her rather than her mother. Assaf corrected him, and once the doctor started talking directly to her mother, her mother seemed to take ownership of her recovery and her recovery proceeded more rapidly. Assaf said it struck her that many of the health literacy problems older adults experience are similar to those experiences by people of all ages and perhaps similar to those of racial and ethnic groups, but the problems are magnified because older adults are
often “invisible.” “The only way you can get someone to not be invisible is to make sure they are active partners in sharing their health care decisions with their health care provider,” said Assaf. “We need to figure out how to do that in the best way.”
Working at Pfizer after many years in academia, her experience has been that when she speaks to her colleagues about health literacy, they tell her she is preaching to the choir. That may be, she said, but even the best choirs need to practice. “Maybe that is the gap we need to fill, that we do not practice enough, and we do not understand what it means to have this issue about health literacy.”
Lindsey Robinson from the American Dental Association said the workshop resonated with so many people because of their own experiences caring for older adults or navigating the health care system themselves. In her case, her mother, who passed away from pulmonary disease, had good interactions when her clinical care team asked her what her desires and needs were and what she wanted the outcomes to be rather than simply making decisions for her because she was in her mid-70s. Her worst interactions, though, were with clinicians who decided there was nothing to do for her mother, whose disease was terminal, and that they did not even try. This made her mother depressed and was disappointing for the family around her who were desperately trying to help her. The best interaction she had with the health care system was the day before she passed away, when the physician who saw her at the interstitial lung disease clinic at the University of California, San Francisco, looked at her, took her hands and told her that he could not cure her, but he could help her feel better. “I learned a lot from that experience,” said Robinson. “It helped me be a better health care provider.”
Robinson, too, appreciated the moral outrage that Thomas brought to the workshop, which reminded her of the first Roundtable on Health Literacy workshop she attended on oral health literacy in 2012. Congressman Elijah Cummings (D-MD), who delivered the workshop keynote address, was outraged and moved to action over the death of a 12-year-old boy who died from a preventable oral health disease in 2007. The boy, Deamonte Driver, died of a brain infection after a lack of accessible dental care allowed bacteria from a dental abscess to move into his brain.3 Robinson noted her appreciation for the work Thomas is doing at the community level because it offers the best opportunity to reduce health disparities, though she wishes that a dentist or hygienist was included in the groups that visit barbershops and beauty salons, given the importance of dental health to chronic disease management.
Offering the final comments, Rosof said he found it interesting that while the discussion started to address health care delivery, it was really the health care team that was the focus of the day. “There is no one individual who provides health care,” said Rosof. “It is really the team, and the team includes the patient, the family, and the community. I think if we begin to think about that a little bit more seriously, we will recognize that we can improve health care by team function rather than perhaps what we think about as a single caregiver.”