As is customary at Roundtable on Health Literacy workshops, the final session provided an opportunity for roundtable members to offer their perspectives on issues or ideas they heard over the course of the day. Brach began by saying that she was struggling to feel that the field was progressing given that she and a colleague wrote a paper a decade ago on integrating literacy, culture, and language to improve the quality of health care for diverse populations (Andrulis and Brach, 2007). Her concern is that, when talking about implementation as the next step, there has to be more than just disseminating the framework. “It seems to me if we are really talking about implementing integrated measures, we would have to think about the criteria for selecting which measures should be chosen in this integrated measurement set,” said Brach. “What are the roles of families and patients and caregivers in making those decisions? Do we have the sort of key driver diagrams to feel confident that these measures are going to produce behavior change that is going to produce the results that we want? I don’t think that we have reached that place yet.” In her opinion, the next step for the roundtable should be to consider how it might address some of those questions and see the idea for others to do the necessary work before moving on to implementation.
Pleasant said that the key issues he heard were whether patient-centeredness should be the organizing rubric for the framework, the burden of measurement, the risk of losing focus on the most vulnerable, the possibility that integration will hide discrimination and inequity resulting from a demonstrated lack of consistency of patient-centered approaches across various populations, and whether what is needed is an integrated
set of measures or integrated care. Another concern is that the focus of the framework is solely clinical, but other domains of life are important contributors to inequity in the health care system.
Given that implementation is local, Pleasant raised the challenge of ensuring the quality of the data collection process. He wondered, too, how it will be possible to create the necessary culture change in health care to implement the framework and the reimbursement mechanisms to pay for implementation. His final concern was how to tease out the reasons for poor performance if the measures are truly integrated. To him, that is part of the ethical dimension George Isham mentioned in the previous session.
Gem Daus from the Health Resources and Services Administration acknowledged that the framework has been built with a great deal of support behind it, but he questioned whether the commissioned paper addressed the added value of integrating these measures. “I ask that because the questions about increased effort and increased cost to implement this would need to be balanced by what is going to be saved by implementing it,” said Daus. “Are we going to actually reduce the amount of time for data collection? Will the data be used more effectively to make decisions to improve the health care system?” Being clear about the value added for the framework will increase the chances of it being adopted, he said.
Kim Parson from Humana agreed that answering the questions Daus posed needs to be the next step in whatever the roundtable does going forward with the framework. Once those questions are answered, the next step would be to build on what she called the “great skeleton” that the framework provides. She also echoed earlier comments that integrated care and navigation should be included in the measures and that patients should have a say in these measures so that they are measuring what patients value and not just what the system values, particularly regarding outcomes.
Laurie Myers from Merck reiterated Pleasant’s comment that most of the focus of the framework and the day’s discussions have been in the context of traditional care providers. Given that a great deal of health care happens outside of that setting, she said it is important and imperative for the roundtable to embrace the challenge of thinking about how the framework would be relevant for all parts of the health care enterprise. For her industry, these issues come up in the context of patient education, and in her experience, pharmaceutical companies are working to consider health literacy and culture when developing materials, rather than simply translating materials. In her opinion, the roundtable has the opportunity and obligation to make sure these discussions are part of the entire health care ecosystem. Opportunities include increasing diversity in clinical trials, both for patients and investigators, and increasing investigator sensitivity to health literacy, cultural competence, and language access.
Kelly commented that the last panel raised important issues regarding
ethics and transparency. “What does transparency mean and to whom? How much is revealed and why, and to whose benefit?” she asked. She also raised the possibility of using ongoing discussions about the framework to address the question of how the measurements will be used. Today, for example, a hospital system gets points if it does better against itself and more points if it does better against everyone else. She wondered about the possibility of getting points for collaborating with other institutions on innovation so that all boats have the opportunity to rise.
O’Leary remarked that the day’s discussion started with a deficit definition of health literacy that is not aligned with current thinking on health literacy. “We know there are some government institutions that still have that deficit definition front and center, but we as a group know there have been papers and deep conversations about why that is not the approach that is healthy or helpful or moves us forward as a system,” said O’Leary, who added that this is a fundamental consideration with regard to ethics and equity.
She then noted that having a framework for measures that situates health literacy, cultural competence, and language access under an umbrella of patient-centered care may have the consequence of changing the relative weight of these fields. “This is already a challenge for health literacy and so I am not sure why this group wants to do this to ourselves,” said O’Leary. From her perspective, health literacy, equality, safety, cultural competence, and language access align nicely in many ways, with many overlaps. “They serve to reinforce processes and activities in each area,” she said. “Clustering those measures could be interpreted to diminish the relative contribution of each and essentially hide some key factors that differentiate the constructs individually.” She hoped the roundtable would consider this issue as it moves forward on thinking about implementation of the framework.
Dezii noted that one benefit of developing a framework such as this is that it identifies gaps. In his opinion, one problem with the framework is that some of the components are not the right measures and that it should start with four to five important measures of outcome. “Once you get those in place, then the accountability is for the outcome, not for the completion of the measure, which goes to our accountability discussion,” explained Dezii.
The important message Willis heard was that health equity should be a priority, and in that regard, she felt the commissioned paper does not include a call for action for systems to look at where they are falling short in actions and policies that promote health equity and produce the desired outcomes. This, she said, is where data are going to be important. Willis also noted that the discussion has focused on community needs, but not enough on the assets that a community has to help enhance its health. Her
final point was that, although she is very much a champion of CHWs, it is important not to overpromise how big an effect they can have on addressing health equity.
Allen said she agreed with the comment that patient-centered care is a value, not necessarily a design or a system, and suggested that the roundtable needs to decide how it feels about whether patient-centered care provides the right structure needed for such a framework. She then said she thought the commissioned paper ignored some important questions, such as why the CLAS standards have not been taken up to the degree this group hoped they would. She agreed with Washington’s emphasis on outcomes and equity for framing which questions are most important to answer, and said that there is a need for more geographic analysis, particularly with regard to language access. Her final comment was that, when talking about transparency and ethics, privacy needs to be an important part of that conversation.
Elwood echoed Allen’s sentiment about the focus on patient-centeredness given how important the entire health ecosystem, including caregivers and families, is to developing health literacy. He also said that the measures in the framework relating to health literacy need to be increased. For example, there are measures about what the provider did to facilitate health literacy in learning, but little on the literacy of individual patients and providers, who themselves may be learning from people who speak other languages. In his opinion, health literacy is a state of being. “Every time one engages with the health system is an opportunity to learn, and there are no measures here for learning,” said Elwood. An example of a potential data surrogate for learning would be if someone goes from irregularly refilling a prescription for a chronic illness to refilling it regularly, it might note a change in someone’s health literacy. As a final note, he wondered what the roundtable might look at to help create a health-literate and diverse workforce.
Dillaha remarked that she has a difficult time identifying good measures for health literacy, which makes it difficult to envision integrating health literacy measures with others. “This discussion is important because we really do need to measure health literacy in some way, but it is hard to do,” she said. She also seconded Elwood’s comment that measurements of health literacy have to apply to more than just the individual. Amanda Wilson from the National Library of Medicine wondered how libraries could be supporters of community efforts to improve health literacy given that 30 percent of questions asked at public libraries are related to health issues.
Robinson commended the workshop planning committee for including oral health in the discussion. “We are a neophyte in terms of developing quality measures,” said Robinson, noting that the Dental Quality Alliance has existed for only 6 years. She added that NQF recently approved a set
of pediatric oral health measures that are now being used by the California Health Insurance Exchange for all dental plans that include pediatric oral health. “We are trying to educate our members on how important quality measures are in terms of oral health,” which she said was challenging because the majority of dentists are not part of any health systems but work in standalone private practices. As a final comment, she advocated for including a component related to oral health literacy in the framework.
Rosof provided the final remarks, stressing the importance of making equity an integral part of quality and performance improvement. As he mentioned at the beginning of the workshop, Rosof described the next steps of the roundtable project on integration of health literacy, cultural competence, and language access services. The roundtable will commission a second paper that will include a revised measurement framework based on the discussion from the workshop and which will also provide a roadmap for integrating health literacy, cultural competency, and language access services.
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