Suzanne Bakken moderated the final panel discussion of the day that explored how the health care field can move forward and communicate about health with immigrants, refugees, and migrants. The panelists were Anthony Iton, senior vice president for healthy communities at The California Endowment; Clifford Coleman, assistant professor of family medicine at the Oregon Health & Science University; Iyanrick John, senior policy strategist at the Asian and Pacific Islander American Health Forum; and Hugo Morales, executive director and co-founder of Radio Bilingüe.
Bakken began the discussion by asking the panelists for their ideas on the key things that health practitioners need to know about communicating with immigrants, refugees, and migrants. Coleman, a family physician, began by noting that this workshop would have been unnecessary if health care providers were providing clear communication as the default. In his opinion, the gap between the level at which health information is presented and the level that these populations can understand is so large that addressing this problem requires looking at everything health professionals do, the way they work, and the way they craft and present messages. As a result, there is no quick answer to this problem, he said, but the first thing that has
1 This section is based on the comments by Anthony Iton, senior vice president for healthy communities at The California Endowment; Clifford Coleman, assistant professor of family medicine at the Oregon Health & Science University; Iyanrick John, senior policy strategist at the Asian and Pacific Islander American Health Forum; and Hugo Morales, executive director and co-founder of Radio Bilingüe, and the statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
to happen is for the health care community to open its eyes and be aware of the problem. All health care professionals, he said, need broad-based awareness raising, and he suggested that if advocacy communities were to take on this task, it would create a real potential to improve lives through changes in communication practices.
John replied by first explaining that the nonprofit Asian and Pacific Islander American Health Forum is a national health policy and advocacy organization that works directly with community-based organizations nationwide. “We see ourselves as an intermediary,” said John. “We try to bring the experiences and voices that we hear from the community to the federal government and engage in advocacy to address the issues these communities are facing on the ground.” For example, his organization has been pointing out the challenges that the Asian and Pacific Islander community has faced enrolling in health insurance marketplaces because of limited English proficiency and lack of knowledge about insurance among immigrants. Both he and Coleman then noted the importance of trust and engagement as the first step in health literacy.
Bakken then asked the panelists to comment on any systemic changes they feel are needed to improve communication with immigrants, refugees, and migrants. Iton responded by first explaining that The California Endowment is in the midst of a 10-year, $1 billion initiative, called Building Healthy Communities, to address health disparities in 14 low-income California communities populated disproportionately by recent immigrants, refugees, and first- and second-generation residents of the United States. The initiative’s one caveat is that it is not spending any money on health care itself. Rather, it focuses entirely on the social determinants of health. In his opinion, Bakken’s question assumes that the health care system needs people to be more health literate in order for the health care system to do what the health care system wants to do to people. He argues the opposite, which is that communities have a good sense of what they need to be healthy, and what they need is for the health care system, the education system, the criminal justice system, and the land use system to cooperate in facilitating their access to health protective services. “It may be that some of these systems are not as literate as they ought to be about the needs of these populations,” said Iton.
With respect to the 14 communities his program works with, building trust and agency, both at the community and individual level, is an important strategy for enabling people to feel they have some control over the things that are happening to them on a day-to-day basis. “Most of what we recognize as the root cause of chronic disease is a sense of allostasis or
allostatic load, where people feel chronically stressed out and lacking control or lacking access to critical resources that they need to be able to pursue healthy lives,” said Iton. This approach, he explains, focuses on allowing people to tell the stories of how they got to where they are today and hear the stories of others in their community who are also trying to navigate in their foreign, and often new, environment. Even for people who have been in the United States for multiple generations, the institutions they come in contact with can still be foreign. “They use acronyms and they have their preferred ways of communicating to people. They have eligibility criteria that you either meet or you do not meet, and if you do not meet them, then you are basically turned away and told that you are not worthy or deserving or sick enough yet,” said Iton. Allowing people to see that others are in the same situation as they are, even if they speak a different language or come from a different culture, is critical, he said, to facilitating a sense of belonging and value, that their perspectives and experiences matter. “We are trying to help some of the institutions that we work with to appreciate that aspect of storytelling as a way of facilitating trust between institutions and populations,” he said.
Morales, who said he emigrated from Oaxaca, Mexico, when he was 9 years old and grew up as a farm worker before going to college, explained that the nonprofit community radio network he founded to facilitate communication among Spanish-speaking immigrant, refugee, and migrant populations, owns and operates 12 full-power FM stations in Arizona, California, Colorado, New Mexico, and south Texas. One message that he heard several times during the workshop, and one he wanted to reiterate, was not to underestimate the anti-immigrant sentiments that exist today. In his opinion, the focus should be on helping immigrants build their own institutions and support authentic community media opportunities, two activities The California Endowment’s initiative is enabling.
“We should be building capacity to address the integration of immigrants through local and regional collaboratives of service providers, immigrant advocates, and legal services,” said Morales. Capacity building, he added, should include creating a positive culture within the immigrant community that includes a positive culture on health drawn from the positive elements of traditional immigrant cultures. In his opinion, capacity building should support traditional arts, immigrant native languages, and multilingualism, all of which are important for the mental health of individuals, families, and communities. In communities with low literacy levels, it is particularly important to identify trusted immigrant messengers. “Even though their formal education may be very low—they may be illiterate—but they may be the most trusted person or leader in their community,” said Morales.
John explained that the community-based organizations he works with
are not community health centers. Rather, they are smaller community-based organizations that provide a variety of different types of services to the Asian and Pacific Islander population across the country. For example, he works with small organizations serving the community of immigrants from the Marshall Islands in Arkansas and from Tonga in Salt Lake City. These organizations provide services such as job placement, help with small business issues, and financial literacy, not just health care services. A major project his organization undertook was to create the Action for Health Justice Network, which Jeffrey Caballero discussed in his presentation, to assist those with limited English proficiency to enroll in Patient Protection and Affordable Care Act (ACA) coverage. “Through that experience, we really saw how the in-person assistance from these community-based organizations was key to helping people enroll in coverage,” said John. When it comes to finding partners, he follows the slogan, “where people live, work, play, and pray,” to identify the organizations who are trusted sources of information in the community. Going forward, he said, it will be important to find partners that can provide financial and logistical support for these small, community-based organizations. His organization, for example, provides grant writing training to help them build their capacities and grow.
Currently, many of the activities his organization and other community-based organizations engage in, such as the development of the glossary of health insurance terms Caballero mentioned, have no adequate financial support and depend on volunteers. The glossaries, for example, depended on an intensive community review process to ensure they were user-friendly and understandable. In his opinion, one way to support these community-based organizations would be to integrate them into the health care delivery system as a means of providing these types of services to these communities.
Coleman said that while raising awareness is an important first step along a pathway to changing the way health information is presented, shared, and made actionable by health care providers, the research evidence is “bleak in terms of our ability to change people’s behavior once they are out in practice.” His institution has conducted a series of studies trying to figure out how to teach its medical students and residents to be the agents of change and do the right thing regarding health literate communication once they get out into practice. Unfortunately, he said, the results of these efforts have shown that an increased awareness and changed attitudes toward communicating better do not necessarily translate into more health-literate communications with their patients because they see the way their preceptors and faculty talk to patients and they slip right into those older practices.
Given these results, Coleman is taking a different approach, which is to teach his students four core habits they will demonstrate consistently even when they think no one is looking. These habits include building rela-
tionships by spending 30 seconds of their time sitting down with patients, engaging them, making eye contact, speaking slowly, and getting the computer out of way. “We are teaching our students that 30 seconds of time, of undivided attention, sets up a successful visit,” said Coleman. The second habit the students develop is to set an agenda to find out what truly concerns the individual in front of them rather than focusing on the first complaint they hear. “Studies show that about 50 percent of the time, the average patient walking into a primary care office will not mention their main concern first, but will mention something else,” he explained.
The third habit he is trying to instill from the beginning of his students’ education is to use plain language in spite of the pressure students feel to use “medicalese,” the new language they are learning and that many other faculty members expect them to use. This is an emerging area of inquiry, he said, and one he and some of his colleagues believe will prove useful. The fourth habit is to use teach-back to check understanding. “Teaching these four core habits is going to be our attempt at changing the system from the learner up,” said Coleman. The goal, he added in response to a question from Iton, is to demonstrate to faculty that the communication style engendered by these habits produces higher quality care.
When Bakken asked the panelists to discuss who needs to be included in change efforts and how to entice them to participate, Iton responded that changing outcomes requires changing the power dynamics in the interactions between institutions and communities. In his experience, “the status quo is the product of a power dynamic that needs to be disrupted,” he said. “The way you disrupt that is to develop meaningful incentives and meaningful accountability measures.” The California Endowment, he said, supports community health by helping communities develop the power to challenge institutions and hold them accountable. His simple answer to Bakken’s question, then, is to develop meaningful incentives for institutions to behave in a way that correlates with higher quality outcomes and accountability measures to “hold these institutions’ feet to the fire.” Faculty access to bonus pools, he suggested, could require meeting certain thresholds in terms of their communication skills. Morales agreed and said the client base needs to be included in developing accountability measures and assessing outcomes. He noted, though, that it is important to do so in partnership with community-serving institutions that are both able and willing to participate and predisposed to collaboration.
Since cost is going to be a major driver of efforts to better integrate community-based organizations into the health care system, John suggested that health economists need to be at the table. “We know that we can
get better culturally and linguistically appropriate care when we involve community-based organizations in helping the limited English proficient and immigrants navigate the health care system, but what does that mean, in terms of cost savings? If we can show that evidence, would insurers and others be more willing to kind of engage in these partnerships?” asked John.
Coleman also agreed that incentivizing “good behavior” is the approach most likely to work, and he cited The Joint Commission’s incentive programs for creating change where change was difficult. “I think The Joint Commission could do a good job, for example, of holding institutions to the Culturally and Linguistically Appropriate Services standards,” said Coleman. In the same way, he suggested that certifying organizations, such as the one that oversees the U.S. Medical Licensing Examination, could incorporate these types of standards into their testing and certifying programs. “I think there is some interest in that area, but there are many competing demands,” he said.
When Bakken asked about the types of resources needed to make some of these changes, Coleman replied, “the easiest answer is money, but the more important one is will.” Going back to his first comments about the importance of raising awareness, he noted that this workshop highlighted many good examples of approaches and programs that work. The next step, he said, should be to raise awareness of these programs and tap into the will of those organizations who see the value of these approaches and of applying health literacy as a tool to improve outcomes for these populations. In his view, health literacy is like a handle that fits on any machine. “Whatever your problem is that you want to fix, you can take health literacy and apply it to that issue. You can generate improvements that way,” said Coleman. The problem, he added, is that not enough people realize how broadly useful health literacy can be.
Morales agreed that will is important, as is the kind of education the nation provides to its citizens. In his opinion, the nation should invest in bilingual education as a means of creating a workforce that communicates better. A more diverse faculty at our nation’s universities and colleges would help, too.
Alicia Fernandez began the open discussion period by noting that even in San Francisco, a sanctuary city where both the mayor and city council have issued statements supporting immigrants and undocumented individu-
als, there is a crisis of fear. Though she acknowledged that it is still unclear as to whether there have been more anti-immigrant raids than there were prior to the new federal administration taking office, she is hearing more anecdotal reports of immigrants being apprehended and of families living in fear and not seeking medical care or in some cases even not sending their children to school. Given this situation, she asked the panelists if their organizations had discussed this situation and if they had come up with ideas for combating this crisis of fear. Iton said that The California Endowment is a health foundation that gives money to support building healthy communities. In this current climate, however, The California Endowment decided to provide funds to defend the rights of people to remain in the United States. Its mechanism for doing so is its $25 million Fight for All Fund, which has the following basic elements:
- Defend the ACA and other pieces of national policy that protect immigrants, including the Deferred Action for Childhood Arrivals and Deferred Action for Parents of Americans programs.
- Work directly with threatened populations, including Muslim communities, undocumented individuals, the transgender community, groups such as Black Lives Matter that are pushing against the militarization of the police, and to some extent women in rural areas needing reproductive health services. This effort provides lawyers, advocates, and works to protect various forms of sanctuary.
- Advocate to support local policies within California that create equity and opportunity for highly vulnerable populations.
- Be proactive about recognizing that California has a different narrative than much of the rest of the country, one of inclusion that recognizes that human capital cannot be wasted if the nation is to thrive in the 21st century.
“We recognize there is a movement afoot in California that needs to be bolstered, one of environmental justice, climate justice, social justice in general, and health equity,” said Iton. “There are a number of different efforts that are happening around this state that need to be brought together around a narrative of California’s future that is taking us into the 21st century by utilizing all of our assets and investing in all of us.” He noted, however, that at a recent meeting he attended with representatives from other foundations, there was a discussion about how many of the programs that support the desired changes are on the chopping block, prompting a general feeling of despair. He asked his fellow foundation representative to multiply that despair by a factor of 100 and know that is what people living in immigrant, refugee, and migrant communities are feeling every day. “That has profound direct health impacts on cortisol and
stress levels. It can change people’s physiology, change their genetic expression,” said Iton. “All of this is happening right now because of policy or in many cases in the absence of policy in the face of abject need. We have to be attentive to that.”
Morales, whose organization has received some of those California Endowment funds, referred to his earlier comment about the need to empower the immigrant community. Toward that end, he and his colleagues are getting families to form support networks in their communities and teaching them how to stand up for their rights. He noted that not all members of the Latino community are poor, and it needs to come together and exercise its economic and political clout. As an example, he recounted how the president of the American Academy of Pediatrics was a recent guest on one of his network’s radio shows. He told about his recent visit to one of the detention centers for refugees from Latin America and described a warehouse scene in which the lights are never turned off and in which children age 5 and older are kept separate from their parents. He also described how these children, who would ordinarily be playing and enjoying themselves, were just sitting still, motionless. “This is the power of the media,” said Morales. “This is a voice that probably half a million Latinos are hearing. These are the kind of stories that need to get out and hopefully will get into the mainstream media.”
Coleman, expanding on the issue of fear, noted there are 40 million Americans who are afraid of losing their health care. In Oregon, where Medicaid expansion brought the state’s uninsured rate down to 5 percent, he is seeing patients daily who are afraid they will not be able to see him anymore. “I just want to make sure we are thinking broadly,” said Coleman.
Changing the subject, Jennifer Dillaha said that she and Michael Villaire held a webinar for the California Immunization Coalition on health literacy and cultural competency. In preparing for this webinar, she reviewed the literature on immunizations and cultural competency and was struck by one study showing that the highest rates of immunization correlated with whether staff in the health department demonstrated cultural humility. “I think of cultural humility as being the mirror image of cultural competency, where cultural competency is for the people you are working with and cultural humility is your understanding of your own culture and its impact on your interactions,” said Dillaha. She asked Rooney and the rest of the panelists if they could comment on any efforts at training for cultural humility. Rooney said that cultural humility is important because it is difficult, if not impossible, to truly understand everything about another person’s culture. “To me, humility is a piece of any type of cultural training or discussions you are having. I think we should all be culturally sensitive, aware, and humble,” said Rooney. She said there are many trainings that stress being
aware of that fact and to be open and sensitive to what people are hearing from their patients.
Coleman, responding from his perspective as an educator, said that when asking students questions related to cultural humility or egalitarian values, they all espouse the same altruistic, affirming attitudes and opinion. In practice, though, implicit bias gets in the way and these same students do not follow through in their actions. “We don’t talk much about cultural competency because it does not get us anywhere,” said Coleman. His institution’s approach was to focus on culturally responsive care by developing a curriculum that invests heavily in having students understand, recognize, and own their implicit bias using the implicit association test2 developed at Harvard University. This validated, online tool measures differences in response times to differences in pictures, and it gets quickly to what a person has learned over time and where they have opinions that may not be willing or able to recognize explicitly, he said.
Lindsey Robinson, 13th District Trustee for the American Dental Association, commented on the efforts going on around the country to integrate oral health into overall health and she asked the panelists is they knew of community-level efforts along those lines. Morales replied that many immigrant cultures dismiss dental care because it is not part of their routine or culture. He, for example, did not see a dentist until he was 34 years old and needed treatment for an infection, even though he had access to free dental coverage when he was in college and graduate school. Access may be an issue, he said, but awareness is the bigger problem for many cultures and he suggested turning to ethnic media to reach these populations and inform them about what dental care means to their overall health.
The final question of the day came from Ruth Parker, who asked the panelists if they had any suggestions for the roundtable specific to health literacy. In his response, John wondered if the roundtable could serve as a clearinghouse of best practices from different parts of the countries. He also suggested that the roundtable should connect with organizations such as his that work with large networks of community-based organizations as a way of sharing health literacy best practices more broadly.
Iton replied that questions about health literacy presume the relationship between institutions and individuals is based on the institutions being experts and individuals as “waiting supplicants to have knowledge disgorged into their beaks.” In his opinion, that frame reinforces community disempowerment. “There has to be a resetting of the assumption that the problem is that a community is not literate and instead think about how literate these institutions are regarding the real needs of communities and
2 The test can be found at https://implicit.harvard.edu/implicit/takeatest.html (accessed June 5, 2017).
the real expertise of communities,” said Iton. His hope was that the roundtable could help reset that dynamic so that communities can help institutions understand how illiterate the institutions are regarding the needs of community members.
Coleman said he agreed with Iton wholeheartedly. He then added that the way the U.S. health profession educational environment feels to him right now is that it will take the rest of his career, if not forever, to move institutions to change the way they train professionals on how to talk and listen to their patients. In his opinion, the way to create the demand to make change happen more quickly is to influence organizing bodies and accrediting agencies, and he said he believes that the roundtable, if anybody, has the potential to exert that type of influence.
Bernard Rosof concluded the workshop by noting that he and several colleagues published a paper that appeared online in January 2017 (Egener et al., 2017) on the responsibility of academic and other health care organizations to maintain professionalism in their communities, with community partnerships being one of the four pillars to meet those responsibilities. Given the discussions of the day, and particularly those highlighting the fear in which immigrant, refugee, and migrant communities are experiencing today, Rosof said this responsibility is even more relevant. In his opinion, the roundtable needs to be more timely, comprehensive, and responsive to community needs. “It is not that we have not been before, but this to me seems more urgent and powerful,” said Rosof in closing.