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Where Do We Go from Here?
The workshop’s final panel engaged in a moderated dialogue that aimed to take the lessons from the preceding sessions and think about next steps in conducting community-based health literacy interventions. Michael Villaire, chief executive officer of the Institute for Healthcare Advancement, moderated the session. The panelists were Maureen Daniels, director of Berkshire Health System’s Wellness at Work program; William Elwood, OppNet facilitator and health scientist administrator in the National Institutes of Health Office of Behavioral and Social Sciences Research; Michele Erikson, executive director of Wisconsin Health Literacy; and Caroline Young, executive director of NashvilleHealth.
MODERATED DIALOGUE1
Villaire opened the discussion by asking the panelists to comment on the challenges the field faces in creating and implementing effective community-based health literacy interventions and to suggest some possible solutions to those challenges. He acknowledged that funding and resources are the main challenges, and he hoped the panelists would address some of
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1 This section is based on the comments by Maureen Daniels, director of Wellness at Work at Berkshire Health Systems; William Elwood, OppNet facilitator and health scientist administrator at the National Institutes of Health’s Office of Behavioral and Social Sciences Research; Michele Erikson, executive director of Wisconsin Health Literacy; and Caroline Young, executive director of NashvilleHealth, and the statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
the more subtle issues, such as trust, buy-in, integrating into the community, value, culture, language, and engagement.
Erikson responded that three things came to her mind, the first being the infrastructure of community-based organizations. Attracting and sustaining quality employees who are engaged in community work or who find the right balance between that engagement and not burning out from the work is a big challenge for community-based organizations. Health benefits, said Erikson, are sometimes a luxury for many of the community-based organizations she works with, and salary levels are often lower than what employees would make doing the same type of work at a for-profit institution. The second challenge she thought of was around buy-in and trust when working with communities. Wisconsin Health Literacy, she said, has been providing support, training, advocacy work, and capacity building for its members for 32 years. It has developed a strong, trusted relationship with its programs that enables the organization to understand what the communities it works with want and need, as opposed to the organization dictating what the community needs. Her third challenge was that of working in multilinguistic and multicultural environments. In one of her organization’s interventions, for example, there were 35 to 40 people in a room, plus 6 translators who were translating at the same time and trying to make sure that the information was delivered in a way that was accessible and understandable for everyone in the room.
Daniels said that her organization, which has been doing outreach in the Berkshires for some 15 years, had an “A-ha!” moment a few years ago when it realized that it was doing outreach in the “hospital way,” and not necessarily in a manner that truly connects with the community. “In the last few years, we have been looking at our verbiage and how we are approaching the conversation around health literacy,” said Daniels. Instead of thinking about the health system’s agenda, the conversation is now about the community’s agenda. Her organization is also starting to be more creative with its solutions, using community health workers instead of nurses as a more sustainable model in the community, one that relies more on people who live in the community. Another challenge, said Daniels, is finding the right partners in the community who will be partners over the long term and who will follow best practices and use evidence-based models.
NashvilleHealth, said Young, is only 2 years old and is seeking to create a community dialogue and awareness about health in Nashville. Her efforts have centered around trying to bring groups to the table who have not been involved in health activities before, and that has involved a great deal of learning and understanding the many layers that exist in a community, particularly in the business community, she said. “As I learned, each layer has a different vocabulary related to health and medical issues, and there is a constant translation,” said Young. One of her challenges is mak-
ing sure that she and the people she speaks with are talking about the same thing and that they are truly understanding one another. As an example, she recounted a recent experience at a dinner for business women in health care in Nashville. As she was networking with the different groups who were talking about federal health care issues, one group mentioned payers, another talked about health plans, and a third was discussing third-party payers. “Now, I know that those are the same things, but does everybody else know that?” asked Young. “That was a clear example of the multitude of terms we use in this work.” One rather simple solution to this challenge, she said, was to pick up the phone, call people, and have a one-on-one discussion with key members of the community.
Villaire then asked the panel for ideas on how the health literacy researchers can work with other organizations that are doing other kinds of work within the community that may not be operating under the same framework. An approach Erikson suggested is to help these other organizations become health literate themselves and to provide them with health literacy skill sets that they can also share with the community. Wisconsin Health Literacy, she said, helps train program directors to deliver health literacy skills to the community and provides them with information on how communities use the information they convey. The goal, she said, is for health literacy skills to remain in the community over the long term, not just when her organization is funding a project.
The issue of sustainability, scalability, and portability to other communities was the next topic Villaire asked the panel to address. Elwood replied that if a program applies for a National Institutes of Health grant, any standing, community-oriented study section is going to look for a process evaluation plan and set of deliverables that the community partners can use to sustain the program if it proves to be effective and if the organization believes it worthwhile to continue the intervention. In the case of Elwood’s office, dissemination and implementation research have grown in importance, and it recently partnered with AcademyHealth to establish an annual conference and training institute to help current and emerging researchers learn the science of diffusing, tailoring, and scaling interventions.2 For immediate action, Elwood recommended partnering with librarians to capitalize on their connections with community members and other community-based organizations who may promote health literacy without even knowing it. Another avenue for scaling is to act as a matchmaker among potential partners in the community who do good work and who can complement one another’s efforts once they are introduced to each other. “When community members and community-based
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2 For more information, see http://www.academyhealth.org/events/site/10th-annual-conference-science-dissemination-and-implementation-health (accessed September 27, 2017).
organizations look to each other and give one another what they have, it is like stone soup,” said Elwood. “They can provide better resources to more people or leverage those resources to reach greater populations than they do by themselves.”
Erikson commented on the ability of programs such as Head Start to scale and spread its work thanks to the long-term commitment from the program’s funders. Often, she said, funders have to move on to another issue, creating challenges for sustainability, spread, and scale. One way to address that challenge is to make sure that community-based partners have the capacity to report, measure, and evaluate their efforts and to provide the information so that program managers can make the case to funders that an intervention is effective and is worth continued funding. Erikson pointed out, though, that the community itself plays a role in sustainability and portability. “If the need is articulated from the community, the motivation to sustain an initiative is going to be so much greater,” she said. At the same time, it is the responsibility of those who develop an intervention to provide the community with the tools and knowledge to sustain an intervention when the project’s funding ends.
For Daniels, the key to sustainability is designing and evaluating a program so that it can be easily transferred into a community-based organization. “When you partner in that way, when you can get stakeholders in the community, whether they are in the business district, government system, or churches, you can have some sort of buy-in that brings different money to the table,” said Daniels. That approach helps sustain an intervention because it becomes a community-driven effort.
Villaire’s next question for the panel addressed the issue of how to identify partners for community-based health literacy practitioners. “When we talk about sustainability for subsequent funding for programs, do certain entities that could provide funding just want to be associated with some of these programs, and can we approach them for funding?” asked Villaire. “Do other entities have other associations or mandates or requirements for being in that community so that they want to be able to contribute?” Young replied that her organization, in fact, exists to form partnerships across the Nashville community, and she has had success when approaching potential partners with humility and openmindedness. For example, when she was trying to encourage the Nashville Chamber of Commerce to get involved in her organization’s efforts, she explained that the health of the community is an economic development issue and that the community was not going to continue to be successful economically without healthy, productive workers. “It did not take long for that to ring home,” said Young. “That was an example of us thinking strategically about partnership building.”
Erikson recounted a story from her organization’s communications specialist who is working on a dementia and Alzheimer’s intervention. A
board member from a literacy agency told her that pastors were working with patients with dementia and Alzheimer’s, so she made a connection to the community pastors and established a training program for them. Other possible non-traditional partners she mentioned included seniors’ organizations, homeless shelters, benefit counselors, and FQHCs. She noted that the American Library Association and ProLiteracy, an organization dedicated to increasing adult literacy, have created a national action plan to look at how libraries and adult education can work together on meeting the needs of adult learners.
Elwood commented on the Friendship Bench project in Zimbabwe, a country with 15.6 million people and 13 psychiatrists. This project has trained 300 Zimbabwean grandmothers in cognitive behavioral therapy and placed them on park benches or other open settings near health clinics (Chibanda, 2017; Chibanda et al., 2015). People arriving at the clinic who display signs of mental distress are told to go talk to the grandmothers, who actively listen and provide feedback and resources. “We are not seeing this just in the United States when it comes to community, but we are seeing solutions on another continent that we could use here,” said Elwood. He said that one big step the field can take is for researchers, including those who do not define themselves as health literacy researchers, to actively seek out community-based organizations to partner together in order to advance the scientific knowledge of communities and address the fact that it is still unclear how people perceive health information and health problems.
The next issue Villaire asked the panelists to address was about how community-based health literacy practitioners can connect and partner with clinical health literacy efforts to produce better health outcomes. One potential place where such partnerships might work is at FQHCs, said Villaire. Daniels responded that her organization is a clinically-based health literacy program that is partnering with the community to implement the Life Enhancement Program that Pleasant discussed earlier in the workshop. The partnerships started with a formative research study conducted with the Canyon Ranch Institute and involved various community-based organizations. In fact, Berkshire Health Systems first tested the program on the leaders of these organizations, along with regular participants, and found that there were many issues with health literacy. “We keep talking about underserved areas, but there are many issues with health literacy with people who have bachelor’s degrees and master’s degrees who are smart people, but who are just not involved in their own health and well-being,” said Daniels. In her opinion, it is important to keep that last observation in mind now that there are so many people who have high-deductible health insurance plans and no idea how to use them. “We have to keep in mind that health literacy is a concern for many people out there, not just the underserved,” she said.
Erikson said that an important consideration is having the community and health care organizations identify priority needs together. She also said that it was important to find the synergy between what the health care organization is trying to accomplish and what the health literacy researcher can bring to the table. Erikson then suggested turning to the adult education community as potential partners.
In Elwood’s opinion, every health, wellness, and literacy encounter should be seen as an individual opportunity to edify all three. For example, English-as-a-second-language instruction can serve as a vehicle for helping people gain health information, and cooking demonstrations can teach numeracy skills and provide health information. Similarly, the portals of most mid- to large-sized health care systems can provide access to tremendous health education curricula, Elwood added. He suggested that any organization that runs a health information site should look at the analytics to find out what type of information people are seeking. “That will tell you what your 21st-century community needs are,” said Elwood. The community should also turn to search engine providers for the same type of information about community needs.
Villaire’s last question had to do with champions, “Many times, we think of organizational champions, someone who clears the way for policies and procedures, but that is a very narrow definition,” said Villaire. “Within a community-based intervention, champions are those people who are really embedded in the community or those who kind of help us to get into there.” The question, he asked, is, “How do we identify champions or the role of a champion? Can we groom a champion?”
Daniels said her program has both kind of champions. Her chief executive officer is the champion for policy and procedure changes, she said. In response to finding out that he had type 2 diabetes, he came to understand the wellness component of health and moved the organization to adopt a more integrative health model. Within the community, she said, champions came to fore quickly when working with the Life Enhancement Program. “They wanted to share their story and talk about it,” she said. “They wanted to go back to work and talk about it in break rooms.” One participant, she said, went on to become a certified wellness coach and got a job working in the community on health literacy. “I think there is plenty of opportunity for champions as long as they are given the opportunity to rise,” said Daniels.
Young said that NashvilleHealth has benefited from having former Senator William Frist (R-TN), a heart surgeon with deep roots in the community, as its champion. “He really served to catalyze the community,” she said, adding that she does not think every group has to have a champion of that stature. “It is just someone who is credible, approachable, and who knows the issue.”
DISCUSSION
Rosof opened the discussion by asking the panelists how they assess resources and identify trusted community partners who want to improve community health or be truly involved in the community when a health care system’s service area encompasses multiple zip codes. Erikson replied that there must be a level of passion and interest in the community, which means that health care organizations should look for champions who are already integrated into the community. “You know it is a good fit if you can already tell their level of investment,” said Erikson. “In those initial conversations about engaging with partners, you get a sense right from the get-go whether or not this is coming from a place of deep concern, commitment, and passion or whether it is coming from a need to check a box. If it is a need to check a box, then I do not think they are your partner.”
Daniels said that she relies on her hospital’s community advisory committee, which reviews all of the health system’s community outreach programming and comprises stakeholders from a variety of different community venues. She also refers to the county health rankings to help steer the conversation of what the health system needs to work on to change. Villaire added that an obvious thing to look at regarding resources is to identify who in the community is currently responsible for disseminating health information. As an example, the family resource center that his organization runs in north Orange County, California, a medically underserved area, provides access to community resources for individuals who come to the center. Contacting the center would therefore be a good starting point for a health system that wants to identify and connect with community resources. His organization’s center has already mobilized the community and organized the community’s resources to provide services to the community. “To the extent that your community is already engaged, at a minimum you are going to have one of these social services agencies like a family resource center,” said Villaire.
That is, in fact, what the system with which he is affiliated, Northwell Health, has done, said Rosof. “We went to our family health center, right to the community that probably needs it the most, and posted on various walls and had the entry nurses ask if people would like to be on the community advisory board,” he explained. This approach, he said, has been very successful and enabled the health system to identify individuals who likely never would have become involved otherwise.
Dillaha commented that some of the champions might be policy makers who are not members of the community, but whose constituents live in the community, and she asked the panelists for ideas on how to leverage the input that community members can give to those policy makers. Young replied that her organization has, in fact, invited local and state policy mak-
ers to be on various working groups, and some of them have participated in those groups. NashvilleHealth has also supported legislation related to those working groups. Villaire agreed that legislators and other policy makers need to be brought in as part of any effort to bring as broad a spectrum as possible to the table. An important point to remember, though, is to get policy makers involved as early as possible and not wait until a policy recommendation is ready.
Baur commented on the fact that 9 out of 10 Americans have limited health literacy and that today’s efforts to improve on that statistic are not making progress fast enough. As an example, she noted that the Head Start program that Herman discussed, as successful as it is, has reached only 140,000 families out of 1 million. “We really have to grapple with scale, and we saw that in the review we did,” said Baur. Daniels replied that she was concerned about the scale issue when thinking about how the Life Enhancement Program only reached 20 people over the 12-week program, but when the sharing data came in, they showed that the program’s effect went well beyond those 20 people. One radio show host, for example, shared what she was learning from the program on her show every morning and told Daniels’s team that callers to her show talked about the program with her every morning. She also noted that spouses of people who went through the program started losing weight because of the behavioral changes that their spouses were making. “Scalability is an issue and can be overwhelming until you bring it down to who you helped today,” said Daniels.
Erikson remarked that people in the community are not the only ones who need better health literacy skills; those working in the health care field also need to improve their skills. She applauded the ongoing accreditation and certification in health literacy initiative because she believes that embedding health literacy principles in the DNA of everyone coming into the health care field can help reach scalability efficiently. Elwood added that more research is needed on the cognitive and biological processes involved in the exposure to, perception of, and processing of health information to make health care decisions in order to increase the knowledge base on how to best disseminate evidence-based interventions on a large scale. Rosof said that he likes the idea of creating a learning health system around the issue of scale, which could reduce the time from discovery to scale and spread. Baur commented that she would like to see the sponsors of an innovation, when thinking about partners, to find those partners who are working at a bigger scale, such as statewide associations, and to test interventions on a bigger scale by involving those partners who are used to thinking on a bigger scale themselves. One added benefit of such an approach is that it would likely provide a better pitch to policy makers.
Baur also commented on the importance of including the community in the science of health literacy and helping community members grasp
the scientific method, and she worried that researchers are largely keeping the science to themselves. Elwood disagreed, saying that “when you are teaching people about healthier eating or managing their blood pressure or glucose levels, you are teaching science to all of those people. They may not realize or perceive it as learning health science, but they are.” His point was that when someone learns to tell the difference between a teaspoon and tablespoon, they can transfer that knowledge to other parts of their lives. Baur explained that the reason she brought up science is that she and her colleagues found it difficult to compare the different interventions they identified in their literature review. In her opinion, too much of the science in publications is a black box, particularly with regard to what behaviors or processes an intervention changes in individuals and communities. Erikson said that her experience with establishing academic partnerships for community-based interventions is that Institutional Review Boards can create barriers to publishing work in the community.
Pleasant asked the panelists to talk about the incentives that they have found useful when working with various audiences to build support in the community. Erikson said that Wisconsin Health Literacy incentivizes community members to participate in its patient advisory councils and attend the meetings with cash and food. She added that a less tangible but highly valued incentive of participating in an advisory council is the ability to meet people, form new friendships, and find new partners and identify new resources in the community for their organizations. The other side of that incentive, noted Villaire, is that organizations get to explain what they do to the other members of an advisory group or working group and advance their particular missions with a community in the context of the group’s efforts. He added that one of his organization’s community partners is an organic grocery store that gives away fresh produce at every community event, be it a back-to-school fair, a senior fair, or a wellness fair, which helps increase turnout at these events.
Parker asked Young to address how she speaks about health literacy as an economic driver when she talks to the business community. Young replied that Nashville’s business community is interesting because it is a headquarters town for many national health care companies. These companies generate some $80 billion in annual revenues and together are the largest employer in the community. She noted, though, that it was challenging to bridge the gap between the health care business world and the community health care world. Her advice was to be very deliberate in conversations with the business community, talk specifically about the social determinants of health, and to use data to remind them about the scope of any health care issues, including health literacy. She cites data, for example, showing that the infant mortality rate in the community is on par with that
of Libya and Russia, and she then describes how that impacts the future economic growth of the community.
Robert Logan from the National Library of Medicine commented that he does not believe the scaling issue to be as big of an issue as many believe thanks to the concept of innovation diffusion. This concept holds that getting to opinion leaders, rather than early adopters, leads to the most rapid diffusion of innovation and facilitates an easier process for strategic planning. “I think it makes it more possible to say we will never reach 90 percent of the population, but if you reach certain opinion leaders in certain kinds of communities and have an organized way of doing that over time, you will reach a good percentage of the population,” said Logan. To illustrate the point, he noted how quickly American society has adopted all kinds of health and technology innovations over the past 50 years. In Paasche-Orlow’s opinion, creating a tool kit for community-based organizations that explains how to engage in health literacy work and assess current organizational attributes as they relate to health literacy would accelerate scaling.
Steven Rush from UnitedHealth Group said that he is not sure there is a difference between rolling out health literacy within a community and within an organization. “There is a level of diversity and equity in both,” he said. He also pointed to the importance of talking to specific partners in their language. “When you talk with the Chamber of Commerce, you use Chamber of Commerce language,” said Rush. “We have talked today about the concept of speaking to people where they are at the time they are at.” He also suggested that the field is about to reach a tipping point with respect to scaling health literacy interventions.
Rosof concluded the discussion with a story about Donald Berwick, former administrator of the Centers for Medicare & Medicaid Services, who when addressing his daughter’s medical school graduation class told the newly minted health care professionals to take off their white coats and stand among their patients, friends, and peers and just listen to them. “When I think about that, I often think about trusted people and the importance of what we are trying to say and stand among those who need you most and listen,” said Rosof.
