6
Reflections on the Day1
In keeping with the roundtable’s traditional practice, the workshop ended with each member reflecting on the day’s presentations and discussions. Daus said that the message he heard was on the importance of listening, observing, valuing, and encouraging, which he said translates into showing love for your community, whatever community means in a particular context. He also heard people talk about “doing with” rather than “doing to” the community. His final comment was how sobering it was to see that so many of the studies included in the commissioned review paper had small sample sizes and could not quantify what they were able to accomplish.
Dillaha agreed with Daus on the importance of linking good community health literacy interventions with love and respect for the community, and to do so with humility. She also noted the need for public health organizations at all levels to fund people who can spend their time developing and sustaining trusted relationships. “To me, that is something that has not been part of the organizational or funding structure, and we really need that,” said Dillaha.
As someone who works within communities, Willis said that she realizes that defining community is a continuous struggle, and how important it is to recognize that the definition of any community is contextual and evolving. She noted that the social and economic models in use have to be
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1 This section is based on the comments of the Roundtable on Health Literacy members who were present at the workshop, and the statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
more sophisticated and complex, and that the health literacy community needs to develop more tools to work with these complex communities. With regard to the key messages she heard, Willis said that the presentations and discussions consistently articulated the need to include more voices in the community in partnerships with researchers as a means of broadening the field’s horizons of where more rigor is needed when it comes to the science. She also said that it sounds as though researchers still need to pay more attention to not taking models and superimposing them on the community.
Rudd said that she liked the combination of starting with a rigorous academic perspective on this work and following up with a concrete and innovative community-based program. She was concerned, however, that nobody was talking about community-based health education, a field for which there is a rigorous, evidence-based foundation developed from the 1950s through the 1980s. She noted that many of the challenges mentioned throughout the day have counterparts in fields such as anthropology and sociology, which documented the activities and engagements of communities in the civil rights movement, the HIV/AIDS epidemic response, and the women’s health movement. “Many of the dilemmas that were raised today have answers that are well documented and well researched,” said Rudd.
Commenting from the view of someone who has done community interventions in a number of fields for 20 years, O’Leary agreed with Rudd that it is important to look at solutions developed by other fields and consider how to apply the lessons those programs have accumulated to designing, implementing, and scaling health literacy interventions. She commented, though, that the day’s discussions made her realize that the field is making progress, and though it may seem slow, progress is happening as communities develop their resources, learn how to fit them together, and bring communities to a place where they want to change. In her opinion, the table is big enough for everybody to participate, and community interventions need to bring in people who are just waiting to be asked to participate.
Terri Ann Parnell from Health Literacy Partners said that the key concepts she heard over the course of the day were the importance of innovation, flexibility, building relationships, creativity, and trust. These take time to develop, she said, and developing them is hard work. “I think sometimes we want a quick fix or the magic wand,” said Parnell. “That is not the way to have sustainable, scalable change.” Given the amount of work being done in the area of community-based health literacy, she believes that steady progress, breaking down silos, and working together on large-scale initiatives can truly make a difference.
Kim Parson from Humana said that she believes that the systems and structures exist to scale up health literacy interventions, but that the field is not leveraging them as it should. She also noted that payers need to be at the table together with librarians and school systems, and that by taking
advantage of each partner’s strengths, the field will get to where it wants to be much faster. Alvarado-Little stressed the importance of involving public libraries as partners in community health literacy interventions.
Amanda Wilson from the National Library of Medicine reiterated the message that libraries are willing partners and the health literacy field should reach out more to the library community. Libraries, she said, are part of a system that can help support scale, particularly at the level of city- and county-wide implementation. She noted that National Network of Libraries of Medicine members receive funding to have time for relationship building and they have been doing so in their communities for many years. This network, she said, is looking at ways of partnering with the Public Library Association and the American Library Association on work addressing health and wellness questions that come to their libraries. As a final thought, she said that the important words she heard throughout the day included humility, flexibility, and love.
Rush said that one of the messages he heard was about the importance of collaborative thinking involving those who are developing health literacy interventions and those who live in the community, with the community teaching the developers about its culture, its needs, its issues, and its concerns. Collaborative thinking will lead to understanding, trust, and buy-in. “If people do not trust, they are going to have difficulty making health behavior changes,” said Rush. Collaborative learning can help with sustainability because collaborative learning helps the community help itself by providing it with tools and resources that meet its particular needs and that reflect the community’s culture and concerns.
Villaire commended the roundtable staff for asking the participants before the workshop to identify what they hoped to learn from the workshop, and he hoped the roundtable would continue to do so for future workshops. In his opinion, one lesson from the commissioned review was that there is still work to do to raise awareness in communities about health literacy practices, approaches, programs, and interventions. “Let us continue to build that bridge and help inform people who are working in community-based organizations and doing community-based interventions to start thinking and incorporating health literacy practices and principles,” he said. Villaire also highlighted several concepts mentioned during the day, including respecting the communities in which investigators work, listening to the community, understanding that building relationships in the community takes time, and realizing that those developing interventions need to be receptive to change, flexible, and curious. Reflecting on the idea of love, he said that he thinks of putting the needs, requests, and desires of someone else ahead of one’s own, and if the field continues to embrace that in its work on health literacy, as well as in life in general, the world would be a better place.
The best people to define community, said Pleasant, are the people who live in it, and the only way to get to a working definition is to go into the community and talk to the people who live there. He also commented on the need to bring together two different paradigms of thought—the medical paradigm and the public paradigm—and getting the medical community and the public to use the same words and have the same goals. The key to accomplishing that is to listen to where people are and use that knowledge to bring people together.
Brach said that she struggles with the evaluation piece of community-based work given that the ultimate goal of evaluation is to find out what does not work, to avoid wasting time and resources, and to spread and scale an intervention that does work. However, as many speakers mentioned throughout the day, interventions need to be tailored to meet the needs of a specific community, raising the question of how applicable the results will be in another community that has its specific needs and characteristics. “That, to me, is something that we have not really tackled today,” said Brach.
Elwood said that he believes it is important when speaking to others to describe what community means, given that place or setting do not always equal community. Community, he said, is more about the relationships among people. In his opinion, it is important to describe the composition of a community and account for the relationships among members of the community, how information diffuses through the community, and how the members of the community make decisions. Doing so will improve the health literacy and numeracy processes that go on in that community.
Stacey Rosen from Northwell Health said that although the members of the roundtable come from different places, at the end of the day, every member has the goal of improving the health of the nation’s communities and the country as a whole. She said that she loved the emphasis on the words humility and flexibility that she heard throughout the day, and recounted something her dean told the 300 or so senior leaders at Northwell Health’s annual diversity meeting. He reminded them not to pat themselves on the back for their community work until the community thanks them, because going into any community and thinking that one knows better is a fast way to fail and lose trust. Rosen also said that rigor in the field is “unbelievably crucial.” The health literacy field should look at work from behavioral economics and implementation science to learn about ways of getting communities to adopt effective interventions. “There is a tremendous amount being written now in change management science, which needs to bring rigor into what we do,” said Rosen. “We need to bring real science into what works and what does not, and bring our different approaches together.”
Logan had two take-home lessons. The first was that the review paper applies as much to health literacy research focused on mental health as it does about community health literacy interventions. His other lesson was that community health literacy intervention research would be improved if evaluation frameworks assessed more of the social and structural determinants of health that affect populations. “It seems to me that progress occurs when we put all of them together,” said Logan. “One of the reasons we want to do that is because health literacy is one of the few variables that is both a structural and social determinant of health.”
Duhig said that the issues of engaging and motivating members of a community will become easier when every individual has access to all of their health information because that will enable individuals to develop an internal locus of control when it comes to their health. Giving everyone control over their own health information will also start driving longitudinal evaluation studies, he said.
Rosof, offering the final comment on the day, mentioned listening, observing, valuing, and encouraging as important messages, as well as the fact that building sustainably healthy communities and community relationships requires time, respect, love, and flexibility as core competencies. He then adjourned the workshop.
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