6
Reflections on the Day
To conclude the workshop, Bernard Rosof asked the roundtable members to provide one or two points of reflection on the day’s proceedings. Catina O’Leary offered two thoughts, the first being that the discussion on making a business case is one that Missouri has been struggling with for 6 years. Her organization has been funded primarily by the Missouri Foundation on Health, but that line of funding is shifting significantly and her organization needs to figure out how to identify significant sources of new funding. Sitting in Missouri, she had been thinking that she was the only person who could not identify a strong business case for health literacy, so in a sense she was reassured to hear that nobody has an answer yet. Her suggestion was that this is a key area to pay attention to, and creating a business case that everyone can use is needed. “It would be nice to have one story that we all felt good about and put the pieces of research and policy together so that we could all speak the same language over and over and not compete with one another,” said O’Leary. “There is one story here somewhere, and it would be good to figure that out.”
Her second thought was that while she heard about funding, initiatives, and policies, she did not hear as much as she thought she would about the disciplines of language access and cultural competence as they affect individuals, perhaps because these fields are still in their infancy. She suggested that the roundtable should revisit these topics again.
Michael Villaire commented that the health care system has been aware of inequities for many years, and while there have been approaches based on policy, legislative, and regulatory payment reforms, the needle has only moved in small increments. “In my opinion, we are essentially not much
further down the road toward a state of health equity in this country,” said Villaire. He recounted Andrew Pleasant’s comment that stories are what win people’s hearts and Rosof’s statement about taking bold steps to move the needle and wondered if a bold initiative might be to engage and activate that segment of the population that is most affected by literacy, language, and culture issues; to collect those stories that can win people’s hearts and get those populations to use their voices to enact change. He noted that the marketplaces have mechanisms in place to rate the services they receive and the places they receive them, and activating consumers of health care to use those mechanisms, just as they do now through Consumer Reports, Angie’s List, Yelp, and other rating sites, could be a powerful approach to forcing systems to change. This approach, he said, would not require prescribing which approaches to use to improve a health system’s performance. “Let the marketplace figure that out,” said Villaire. “That is who we are as a country. We allow this notion of competition to let the good practices bubble to the top. I think there’s a great power in that, and I think we may be able to find a role to play there.”
Lori Hall from Eli Lilly and Company offered an approach to operationalizing literacy, language, and culture from her perspective of someone who has to collect information and best practices and turn those into actions that can be implemented across her organization. Noting that in many cases her organization spends so much time analyzing that it becomes paralyzed, and one way of breaking out of that mode is to look for a few steps that can be taken to get the ball rolling. She referred to the “Ask Me 3” campaign that aims to improve communication between patients and health care providers, encourage patients to become active members of their health care team, and promote improved health outcomes, and wondered if there was a similar campaign that could be aimed at providers to give them one or two tools they could implement immediately with a couple of patients per day. She suggested a repeatable message that providers could memorize quickly as one possibility, or a simple technique for engaging in active listening, or perhaps three questions that providers could ask their patients, such as How do you feel about what we just talked about? What questions or concerns do you have? What is your understanding of your condition? The idea would be to create a campaign with a marketing spin, something memorable or even funny, that could be quickly and easily disseminated and not feel like a burden to providers who are already feeling overwhelmed by so many competing priorities. “We talked about low-hanging fruit earlier, and I think this could be a place to start,” said Hall.
Terri Parnell from Health Literacy Partners said she was struck by the concept of social noise and the effect that it can make in the provider–consumer relationship and effective communication. She also suggested looking at data needs from the perspective of the consumer and using the
EHR to record if a patient had teach-back, the time it took to get language access services, or any culture-related challenges the patient faced. She also remarked that the day’s discussions made her think of the book The Spirit Catches You When You Fall Down by Anne Fadiman that documents one tragic outcome of a collision between cultures in the health care system.
Christopher Dezii said the only way he knows to hold people accountable is to measure something, and that what gets measured gets managed and reimbursed. He believes there needs to be incentives to move these fields forward. “I don’t think Adam Smith’s invisible hand is working,” said Dezii. In his opinion, implementing performance measures is the key.
Robert Logan from the National Library of Medicine acknowledged hearing during the workshop’s discussions that the NIH could better support cultural competence, language access, and intervention research; the development of more comprehensive, evidence-based best practices; and research demonstrating a return on investment from intervention efforts, similar to the work it funds on effectiveness research. He said he would mention these suggestions at future meetings where NIH staff collectively discusses funding priorities. After reminding the workshop that there are other agencies, particularly PCORI, that could fund this type of work as well, Logan said what he would truly support would be the creation of a home to fund the integration of multidimensional research that addresses how to enhance assessment at all levels of measurement of health literacy, health disparities, cultural competence and language access; how to enhance health literacy, health disparities, cultural competence, and language access interventions; and how to encourage the diffusion of findings or their translation into practice.
Logan then suggested “addressing the need for the creation of a research center with those goals and objectives in mind, as well as the creation, dissemination, and professional diffusion of integrated health literacy, cultural competence, health disparities, language access research, and practice.” He also suggested, in keeping with Rosof’s call for a bold initiative, that this roundtable’s efforts would be “10 times more effective” if it collaborated with the National Academies of Sciences, Engineering, and Medicine’s Roundtable on Population Health Improvement, which he thought was in the realm of possibility. “If we could get such an ally to come to the same conclusion, we will have a far bolder statement to make,” said Logan.
Rima Rudd commented on a theme that she thought emerged over the course of the workshop, which was the feeling of discouragement, despair, and anger she heard from several of the panelists and participants. She noted that the general strategy has been to take a logical, sustained effort, to create a strategy, make the business case, and speak the language of those who need to be in alignment with these ideas to bring about change. She wondered, though, if what is needed is to bring more passion and audacity
to the effort. One might think about the Black Lives Matter movement that convinced the nation of the need to collect data on how many people are killed nationwide by police officers and the Occupy Wall Street movement that made the issue of equity a central theme in the 2012 presidential campaign. “Perhaps we need a little more focus on the issue of social justice and truly make the values argument and not simply the logical argument of the business case,” said Rudd.
Laurie Francis from the Oregon Primary Care Association agreed with Rudd and, thinking about the six steps that Marshall Chin discussed in his presentation, suggested a way to operationalize that idea over the next year or two. The operational plan would include a policy dimension, a care dimension, a payment dimension, and perhaps a community dimension, and she would call it Triple LC, for listen, language, literacy, and culture, with listen at the beginning. She would also weave social justice throughout the process. She also recounted a small project her organization conducted that was relevant to the idea that Lori Hall had about having providers to ask patients a standard set of questions. She and her colleagues at 10 clinics in Oregon asked 10 patients three questions about social issues, connectivity, economics, and stress. The result was that 5 of the 10 clinics changed their model to embrace the social issues people are facing. Oregon now calls this simple intervention of having providers ask about a patient’s life, about asking how they can serve the patient today, “radical customer orientation.”
Earnestine Willis agreed with Francis’s emphasis on listening and then said that in her mind, the health status of many people depends on the social determinants of health, with literacy, language, and culture being just one of the dimensions of those social determinants. In her opinion, “The discussion here is somewhat superficial, and we do not do the heavy lifting that we need to hear from the people who are most impacted by health inequities and to engage them in our process.” Her other concern is that there are so many systems and complex entities, including schools of public health, schools of health education, universities, and others, that affect those who experience the health inequities and who need to be involved in this effort. She said she appreciated the real-world examples of working at the state level to produce change presented in the final panel session and suggested spending more time thinking about how to operationalize true action agendas and strategies. Willis added that while there are good data available, they do not come from the people who are most affected by issues with literacy, language, and culture and will not necessarily help with efforts to operationalize what needs to happen in a patient-centered, culturally sensitive, and adaptable manner.
Kim Parson from Humana agreed with both Rudd and Willis and added two things to consider. The first was that culture is not just about race and ethnicity, and the second was that the culture of the health care
enterprise—payers, providers, the pharmaceutical industry, and others—is also an important factor to consider. She then gave an example of how important it is to listen, and noted that while it was about a physician, it could apply to any other part of the health care enterprise. A physician had seen a homeless man, who clearly had mental health issues, come in to the emergency department for treatment many times, but the emergency department had no luck convincing this man to take his medications. Sometime later, the physician starting working in a clinic that served the homeless and over time he saw this man and eventually was able to have a conversation with him. This was the first time the physician had ever heard the man speak, even though he had encountered him many times in the emergency department, and he asked him what he was most focused on regarding his health. The homeless man responded that he needed to get some sleep. Through that opening, the physician was able to prescribe medications for the man’s mental health issues that also enabled him to sleep better. Not long after that, the man returned and said the medication was working and that he wanted to continue taking it. The end of this story was that this man was able to leave the streets and live in supportive housing for more than 20 years. That story, said Parson, shows how listening and having real conversations can produce better outcomes, and that is the return on investment.
Lindsey Robinson, a pediatric dentist and the American Dental Association’s 13th District Trustee, also agreed with the call to bring more passion and energy to these issues. “In my thinking, the business case is more about a call to action, and it is a call to action because people are dying,” said Robinson. “That should be the motivation for us to make an impact.” She noted the stories she heard during the workshop showing the real-world impact of paying attention to health literacy, language, and culture should be a call to action. She endorsed the idea of calling for a surgeon general’s report that would highlight the importance of health literacy, but also noted the need to make sure its effect filters down through all segments of the health care system, including professional education, health policy, and funding. “It all needs to be aligned, and that is what I am taking away from this meeting,” said Robinson.
She then said that she appreciated the nested dolls metaphor discussed earlier because to her it represents how her profession has been siloed from the rest of the health care system. She believes there are opportunities to be mutually supportive of each other in terms of consistent messaging on health literacy, language, and cultural competence. “It is about listening to the person and supporting their self-efficacy whether they’re in a dental chair or in a medical office,” said Robinson.
James Duhig from AbbVie Inc. said he was struck by the possibility of taking systems-level approaches to addressing health literacy, language, and
culture given the different functional areas and professions that need to be involved for any effort to have a real effect. He also noted the importance of the comment about the need to know more about who patients are and what their lives are like and Wolf’s questions about how to apply what is already known about health literacy to address culture and language issues. He added the questions that he was looking forward to addressing would examine what a systems-level approach would look like and how systems research could be brought to bear on these issues. He noted the consumer products area, where innovations are incorporated so rapidly into product and consumers provide feedback through the choices they make, could offer some lessons on how to use market pressures and consumer feedback to produce change in the health care system through incremental but rapid-cycle and continuous innovation.
Wilma Alvarado-Little remarked that she did not want to lose sight of the resources that the ACA and CLAS standards provide, at least from the language access perspective, to move the field forward, and she thanked Guadalupe Pacheco, during his tenure with the federal Office of Minority Health, for giving language access a voice. She then spoke about research on the prevalence of various health conditions in communities and how these studies often do not include individuals whose primary language or preferred language is not English. The usual excuse given for excluding those individuals, said Alvarado-Little, is that it is too expensive to translate surveys into different languages or to hire interpreters, but having worked in an institutional setting and translating and interpreting documents for institutional review boards, there are ways to do this that are affordable. “If we are going to talk about research, let us do it in a way that is inclusive and not just convenient,” said Alvarado-Little, who also noted the importance of including individuals who are hearing impaired in research.
Andrew Pleasant said he wanted to tackle the depression and pessimism that seemed to be spreading among the workshop participants by recounting some stories about real people in the real world who had positive health outcomes resulting from the power of health literacy and addressing culture and language. The Canyon Ranch Institute, he explained, has hosted a health literacy program for many years in multiple cultural settings, in multiple languages, and in multiple regions and setting across the United States, with the same health literacy approach tailored to each community. His organization’s view is that health literacy prescribes one action—engage people early and often. “If you do that, you will learn about them,” said Pleasant. “You will learn about their histories, their families, their children, and the children they do not yet have and want, and that means you have inherently taken an integrative approach to health that includes mind, body, spirit, and emotion,” the latter of which, he said, is often ignored but is real and important.
Taking such an approach, he said, regardless of how a provider was trained, immediately changes the model from a sick-care model to a preventive one that helps people turn their lives around before they get sick. “We’ve seen this numerous times,” said Pleasant, noting the many diabetics seen in the program who become compliant through lifestyle management and without drugs, and the people who come into the program suicidal and leave with a new outlook on life and a new role in the community. “Think about that—a health literacy program improving civic engagement across cultures so that people are more active in their communities,” said Pleasant, who added that these individuals become teachers, they go back to school, and they not only help themselves but their friends, families, and community members make changes that improve their health. All of this, he emphasized, is possible using what is already known. “It is not enough to study what people with low health literacy do not have in their lives; because, what are we going to learn that we do not already know?” asked Pleasant. Rather than be pessimistic, he added, there should be optimism because the tools that have been developed are powerful and will change lives.
There is one obstacle, however—the nation’s perverse payment system. “Can I prove the value of those changes in people’s lives? Absolutely, because we do it every day,” said Pleasant. “Is the valuation perfect? Of course not, but it is good enough to make comparisons so we can say to the payer system, ‘You are reaping these benefits without having to sow anything so how about sharing some of those savings?’”
He then told how the chief executive officer of one of his organization’s partners, Urban Health Plan, a federally qualified health center in one of the poorest congressional districts in the United States, went to neighborhood stores, asked them to start selling fruits and vegetables, and said that she would buy them if they had not sold by the end of the day. Pleasant said she had to buy that produce for a week and a half, but 7 years later that community now has farmers’ markets and stores that exclusively sell tabletop fruits and vegetables.
“What we can do,” said Pleasant, “is create leaders from the bottom up. It can be the participants, the people who we have worked with who become teachers, and it can be that chief executive officer who works every day to change the structure of health in her community.” What is truly amazing, he added, is that when the program starts, communities with different cultures have statistically significant differences in mind, body, spiritual, and emotional health outcomes, but when the program ends, those difference disappear. The lesson, he said, is that there is a place called health that is culturally blind. “We can help everybody get there with health literacy, so please do not be so gloomy,” said Pleasant.
Gem Daus commented that he was glad to hear there are examples in the real world where health literacy, cultural competence, and language
access are integrated in the real world. He suggested looking at case studies to find out how the health system failed individuals or helped them be successful on a number of measures. “If we can tell the story on that level, it will become easier to understand what systems can do, and then become part of the carrot to create an incentive for systems to change,” said Daus. He also thanked the participants for reminding the roundtable about how important it is to understand both the patient’s and the provider’s cultures.
Jennifer Dillaha remarked that the discussions at this workshop have prompted her to take action herself in her sphere of influence in the Arkansas state health department, particularly with regard to immunizations, but for other areas as well. She, too, acknowledged the importance of learning about the health system’s culture in order to produce change and said she was going to redouble her efforts and commit to understanding the effects of health literacy, language, and culture as a leader, encourage their integration and incorporation in all that her department does, and find others in her agency working on areas and partner with them. “It’s a daunting task because it means that I cannot continue doing things the way I do them now, but I will change,” said Dillaha.
Winston Wong was struck by the need to come to grips with what the ACA offers as opportunities and what it does not, and to understand that the United States still has not embraced the notion that health care is a right. He noted that of the 35 million Americans who were uninsured before the ACA was passed, only 11 million have been insured since, meaning there are 20 million Americans who have been effectively shut out of the health care system. The fact that the nation does not yet embrace health care as a right is what enables the country to rationalize why people who enter the health care system can face challenges in terms of accessing care. If health care is a privilege, not a right, then people who come into the system have no right to expect certain behaviors, explained Wong. “What happens is if you have a physician or health care system that is indifferent, disrespectful, dismissive, or callous, well, you had just better be happy you got something at all,” he said. Given that attitude, those who want to change the system need to be forceful and deliberate about creating a narrative that says health care is a right and that is different than appealing to the underlying decency of Americans with regard to saying people need to be treated in a way that enables them to have the full fruits of what a first class health care system can provide. As a final comment, Wong said, “All of the things we deal with did not happen by accident. They happened because of an etiological framework that rationalized the behavior we see in the system,”
Michael Wolf wondered if something could be done to bring back the Translating Research into Policy and Practice Conference that AHRQ used to hold. The goal of that conference was to learn what became of the projects that the agency funded and to find out if a program had a legacy
product that translated into something that stuck. In this case, such a conference could be used to highlight examples such as North Shore–LIJ, to identify best practices that others can adopt, and to provide a roadmap for systems that want to change but do not know how to start and what measures and evaluations they need to assess outcomes.
Steven Rush agreed that collecting stories and creating narratives is important and should continue, and that developing a business case is also necessary. He noted that changing the health care system, which has billions of dollars invested in the status quo, will require additional dollars, which would be the function of the business case. He said that it will be the combination of stories and a business case that will lead to success.
Michael Paasche-Orlow said that he agrees with Wong that there is the philosophical problem of health care as a right versus a privilege that needs to be resolved, and as an example, he noted the perverse situation in several states where the best way to receive treatment for hepatitis C is to commit a felony and get treated in prison. In a rights framework, it would be obvious that everyone should be able to have language-appropriate services and culturally competent, health literate care. He then commented that breaking down silos between these three areas is happening largely because research on language access and cultural competence is so poorly funded that investigators in those areas are being forced to join with health literacy. He also noted that the health literacy program at NIH has to be reauthorized, which is not a fait accompli, and that the last time that program was up for reauthorization, several of the NIH institutes dropped out of the program. “So even though I think the brand is strong, I also think we have to be vigilant and worried,” said Paasche-Orlow.
MaryLynn Ostrowski from the Aetna Foundation commented that Wolf’s suggestion to provide patients with navigation support at the point of care was a good one and something doable. She noted that the Aetna Foundation is focused on using technology to create health equity, and she is sure there must be some strategy that would enable navigation support in real time. Her hope is that some entrepreneur would address that opportunity. Ostrowski also commented on the importance of nonverbal communication and of keeping it part of the discussion, and of the need to take a more holistic approach to health that does not treat the mouth or the brain separately from the rest of the body.
Then, addressing the subject of social determinants of health, she wondered where the outrage is over the fact that there can be two communities 3 miles apart—Roxbury, Massachusetts, and the Back Bay neighborhood of Boston—with life expectancies that differ by more than 30 years. The life expectancy in Roxbury is 59.3 years, while in Back Bay it is 91 years. “That is a huge issue of health equity and should not be tolerated,” said Ostrowski. “Yet people are walking in and out of these neighborhoods,
passing each other on the street, with no realization of what is happening because of the social determinants of health.” In her mind, efforts to address issues of health literacy, language, and culture will not succeed unless the medical community and the public health community come together to truly address the social determinants of health.
Ostrowski’s final comment was the policy regarding immigrating medical professionals that restricts who would be able to continue to practice without having to recertify or go back to school for further training. She believes that this policy has had detrimental effects with respect to the diversity of the health care workforce and wondered if there were some way to perhaps fast-track those professionals as one way of creating a medical system that reflects the overall population of the country.
Marin Allen from NIH offered the final comment electronically. She hoped the roundtable would be able to come up with a picture of an ideal transaction in a full system that works and weaves all three of these threads together.
To conclude the workshop, Rosof noted that he did not hear a unified theme, but neither did he hear pessimism. “In fact, my thinking was that there is commitment and optimism going forward as to what we can and cannot do to make a difference,” said Rosof. In closing, he suggested that a next step for the roundtable would be to develop an action agenda that would enable the roundtable and other interested organizations to speak with a consistent voice.
