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Why Culture Matters in Addressing Health Inequities

Following the keynote address, two speakers considered the broad issues involved in using culture to reduce health inequities. Bonnie Duran, associate professor in the department of health services at the University of Washington School of Public Health and director of the Center for Indigenous Health Research at the Indigenous Wellness Research Institute, described the historical forces that have shaped Native communities and the role of research in documenting and addressing problems in those communities. Michael Trujillo, associate dean for the Outreach and Multicultural Affairs Program and professor in the department of internal medicine at the University of Arizona College of Medicine in Phoenix, recounted some of the efforts he made as a federal policy maker to incorporate culture into health care systems and described the potential that remains.

THE LEGACY OF COLONIALISM

Colonialism is a cultural event (Kelm, 1998), said Bonnie Duran, University of Washington School of Public Health. It involves control of not just people but also the context of their lives—control of the economy through land appropriation, labor exploitation, and extraction of natural resources; control of authority through government, normative social institutions, and the military; control of gender and sexuality through oversight of the family and education; and control of subjectivity and knowledge through imposition of an epistemology and the formation of subjectivity (Quijano, 2007).

Federal Indian policy has been dictated by a succession of colonial



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3 Why Culture Matters in Addressing Health Inequities Following the keynote address, two speakers considered the broad issues involved in using culture to reduce health inequities. Bonnie Duran, associate professor in the department of health services at the University of Washington School of Public Health and director of the Center for Indigenous Health Research at the Indigenous Wellness Research Institute, described the historical forces that have shaped Native communities and the role of research in documenting and addressing problems in those commu- nities. Michael Trujillo, associate dean for the Outreach and Multicultural Affairs Program and professor in the department of internal medicine at the University of Arizona College of Medicine in Phoenix, recounted some of the efforts he made as a federal policy maker to incorporate culture into health care systems and described the potential that remains. The Legacy of Colonialism Colonialism is a cultural event (Kelm, 1998), said Bonnie Duran, Uni- versity of Washington School of Public Health. It involves control of not just people but also the context of their lives—control of the economy through land appropriation, labor exploitation, and extraction of natural resources; control of authority through government, normative social insti- tutions, and the military; control of gender and sexuality through oversight of the family and education; and control of subjectivity and knowledge through imposition of an epistemology and the formation of subjectivity (Quijano, 2007). Federal Indian policy has been dictated by a succession of colonial 13

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14 LEVERAGING CULTURE TO ADDRESS HEALTH INEQUALITIES narratives (Shelton, 2004). A narrative of assimilation and allotment domi- nated from the 1870s through the early 20th century. Given this long historical emphasis on assimilation, in 1883, some forms of traditional medicine were outlawed, and in 1887 the Allotment Act abolished group title to Native land. Colonialism was not just an economic event but a cultural event. It sought to control gender, sexuality, subjectivity, and even knowledge. During this period, “expert knowledge” formed a close rela- tionship with political power in determining perceptions of Native peoples. Duran has collected more than 100 19th-century articles from scientific and medical journals in which Native peoples are described in crude and stereotyped terms. For example, in an article entitled “Obstetric Procedures Among the Aborigines of North America,” Eli McClellan wrote, “The Navajoes, a branch of the Apache tribe, live in the rudest huts and lead a drunken, worthless life. The women are debased and prostituted to the vil- est purposes. Syphilitic diseases abound” (1873, p. 585). Colonial themes of the destruction of Native culture and Native Americans as a people imbue early social science, said Duran. Colonialism has occurred not just in the United States but also through- out the world (Alexander et al., 2004), and it has generated an international response. The 1948 United Nations (UN) Universal Declaration of Human Rights stated, “The principle of universality of human rights is the corner- stone of international human rights law.” The 2007 UN Declaration on the Rights of Indigenous Peoples affirmed that “indigenous peoples and individuals have the right not to be subjected to forced assimilation or destruction of their culture.” It added that “states shall provide effective mechanisms for prevention of, and redress for any action which has the aim or effect of depriving them of their integrity as distinct peoples, or of their cultural values or ethnic identities.” The relationship between indigenous knowledge and Western science continues to be overshadowed by the history of colonialism, Duran said. Many indigenous people believe that evidence-based interventions are a form of forced acculturation. Many evidence-based interventions are extremely prescriptive. They target things like obesity or chronic disease that involve people’s actions and behaviors, which are part of culture. Most of the evi- dence-based interventions developed through randomized controlled trials have not been tested in communities of color, and there is no evidence that they work in those communities. Revitalization of culture through indigenous health promotion and treatment, as a hybrid approach, can be much more effective than relying purely on Western medicine, said Duran. Similarly, pragmatic trials and comparative-effectiveness research could have better success in determin- ing what is effective in communities of color than randomized controlled trials. Why mandate a new heart disease drug that is only minimally more

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WHY CULTURE MATTERS 15 effective than low-dose aspirin?, she asked. In another example, ideas such as the contention that historical trauma has negative health effects, long derided as having no empirical basis, now are being verified through inves- tigations into epigenetics and other fields. Duran described two research projects being conducted through the Center for Indigenous Health Research that demonstrate how to leverage culture to reduce health disparities. With funding from the Native American Research Center for Health, the center is working with the National Con- gress of American Indians (NCAI) to look at the variability, across several dimensions, of community-based participatory research. The project is assessing and describing the impact of governance—and tribal sovereignty in particular—on community-based participatory research processes and outcomes across communities of color, including Native American com- munities. It is examining the associations among group dynamic processes and recording three major outcomes of this research: culturally responsive and culturally centered interventions; strengthened research infrastructure and other community capacities; and new health-enhancing policies and practices. Finally, the project is identifying promising practices, assess- ment tools, and future research needs for community-based participatory research, with NCAI bringing those practices and tools to tribal leaders and researchers. Duran emphasized the importance of partnered research in particular, because it results in culturally centered measurements and interventions. The research group at the Center for Indigenous Health Research has been working with a health communications scholar who developed scale domains for cultural centeredness, which include factors such as the role of the community voice in identifying problems and solutions (Dutta, 2011). These scale domains contain elements of cultural safety, cultural humility, structural determinants of health, and communicative agency. As an exam- ple of cultural centeredness, Duran cited a billboard in Navajo country that reads, “Have you noticed a change in your harmony, breath, energy? It may be [tuberculosis].” “There is cultural centeredness right there,” she said. The research project, which is surveying 164 projects, was still under way at the time of the workshop, so Duran was able to share only pre- liminary results. But the research has shown that cultural centeredness has positive effects on the personal benefits participants derive from research, including their personal agency in dealing with health issues. Duran and the Center for Indigenous Health Research also are involved with a second study, in partnership with 34 tribal colleges and universities, to document alcohol and drug problems. The study is looking at what is known about problematic alcohol and other drug use; risk factors, protec- tive factors, and outcomes of alcohol and other drug use; the extent of clinical-level problems; the best, most promising, and current practices

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16 LEVERAGING CULTURE TO ADDRESS HEALTH INEQUALITIES for alcohol prevention, screening, treatment, and referral services; and the organizational capacity and readiness of tribal colleges and universities for student alcohol interventions. Tribal colleges are located for the most part in rural, economically depressed places. But the study has found that social capital is very strong in these institutions. According to surveys conducted for the study, 88 percent of faculty and staff strongly agree or somewhat agree that people associated with a tribal college demonstrate respect for the beliefs and values of other people’s spiritual and religious traditions. More than three-quarters of faculty and staff believe that traditional activi- ties bring people together regardless of conflicts on the campus. The per- centages were even higher for student responses on those two questions: 94 percent and 87 percent. Students and faculty both believed that the tribal colleges were working in their best interests and that they were able to bring people together to solve problems. Solid majorities of students said that their institutions educate students to take responsibility for their own problems and give students an opportunity to voice their concerns to faculty and staff. Public policy is not driven by data alone, Duran emphasized. Compel- ling stories often convince policy makers to go in one direction or another. Thus, examples of how culture impacts health status have to be circulated along with data on culture’s impact on medicine. For example, one much- discussed hypothesis, said Duran, is that people are no longer citizens of a society; instead, they are clients of a system. “We have to go back [to] being citizens having control over a health care delivery system,” she concluded. Revitalization of culture through indigenous health promotion and treatment, as a hybrid approach, can be much more effective than a reliance purely on Western medicine. —Bonnie Duran Incorporating Traditional Values and Practices into Federal Policies When Michael Trujillo, University of Arizona College of Medicine in Phoenix, was director of the Indian Health Service (IHS) during the Clinton administration, he released a memo “to affirm [his] commitment to protect and preserve the inherent right of all American Indians and Alaska Natives (AI/AN) to believe, express, and exercise their traditional religions.” The memo went on to lay out the policy of the Traditional Cultural Advocacy Program, which it called “an important means of ensuring that traditional

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WHY CULTURE MATTERS 17 healing practices are respected by IHS employees in all our services and programs.” This initiative was the product of months of meetings and deliberations not only within the IHS but within the Department of Health and Human Services and other agencies. The goal was to reflect traditional medicine and cultural advocacy not only for clients of the IHS but also for the employees, providers, and other staff who set policies and provided services. The initiative signaled that “the management, the participation, the inclusion, and the involvement really came from the tribal leaders and people that we served,” said Trujillo. A major challenge of the initiative was to define a traditional medicine provider. The definition used today, as specified by the IHS after consulta- tion with tribal leaders, is “a person who is trained in a Native American community and applies culturally specific knowledge and skills in the diag- nosis, treatment, or referral of patients to promote their well-being physi- cally, mentally, and spiritually” (IHS, 2007). Definitions of providers can raise complicated issues of financing and reimbursement, Trujillo acknowl- edged, but definitions also can demonstrate that traditional medicine is part of the Indian health program. As part of this initiative, the IHS, which had no allocated research funds of its own, partnered with the National Institutes of Health to direct research funding to tribes and to urban programs. This funding has enabled tribes and other programs to manage, administer, and oversee research while also partnering with universities, communities, and other institutions to do research “with the tribes, not on them,” as Trujillo put it. In addition, this research funding has made it possible to train and mentor researchers of Indian background or heritage. The development of research programs with Indian tribes has led to a number of other initiatives. An association for Native American researchers has been created. Tribes have become involved in collaborative processes to decide whether they want to be involved in research and to develop protocols. For example, Trujillo has been involved with the Translational Genomics Research Institute in Arizona, which developed a research proto- col with one of the tribes in the valley. The tribe has had complete control of the process, including tissue banking and collection of tissue. It approves any papers generated by the research and is a collaborator on those papers. It also controls the data and statistical analysis. When the final agreement was signed by the CEO of the Translational Genomics Research Institute and the chairwoman of the tribe, the document was blessed, followed by a blessing from a traditional healer on the floor where the tissues were going to be held. The instruments and storage areas for the tissues were also blessed, as was a separate location where tissues were going to be banked. The individuals who handle the tissues were blessed over a period of time, and any new individuals who join the research are fully trained in the

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18 LEVERAGING CULTURE TO ADDRESS HEALTH INEQUALITIES standards that need to be maintained. “It has become a model protocol in many areas,” said Trujillo. After leaving the IHS, Trujillo was associated with the Department of Veterans Affairs (VA) program in New Mexico and worked on reimburse- ment for veterans or others who wished to use traditional medicine within the VA system. He helped work out a process by which an Indian individual who wanted to receive traditional healing could be reimbursed for that service, including travel and family costs, a policy that then was adopted by several other VA hospitals around the country. Health care facilities and programs need to recognize that health is multi-factorial, Trujillo stated. Accreditation, cultural inclusion, and other aspects of the system need to reflect this recognition. “Unfortunately, many times it is a noontime lecture,” he said. “We as individuals who are part of programs, who care for individuals or communities, must make sure that that is not just a check mark, but rather it is an implementation of a process. . . . It is establishing trust not only with the communities and those individuals who walk through our doors, but also with our own staff and our peers.” Trujillo concluded by quoting Black Elk, a holy man of the Oglala Sioux, from John G. Neihardt’s 1932 book Black Elk Speaks: “Of course, it was not I who cured. It was the power from the Outer World. The visions and the ceremonies had only made me like a hole through which the power could come to the two-leggeds. If I thought that I was doing it myself, the hole would close up and no power could come through. Then everything I could do would be foolish” (p. 163). Researchers need to do to research “with the tribes, not on them.” —Michael Trujillo Discussion During the discussion session following the panel presentations, Frank James, a physician and health officer for the Nooksack Tribe, noted that his tribe was the recipient of more than $2 million from the Substance Abuse and Mental Health Services Administration (SAMHSA) to address alcohol issues among youth, and many other tribes were funded as well. The people who control funding streams, like those at SAMHSA, are good people with good intentions, he said. But they want evidence-based interventions, and such an approach can create major conflict in Native communities. Culture is the most effective and highest order of prevention, he said. For example,

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WHY CULTURE MATTERS 19 he works with a canoe poling tradition, in which canoes are navigated with a pole rather than a paddle, that provides “amazing” health benefits. How can federal agencies be given the message that evidence-based practice is not sufficient and is not proven in Native communities? Trujillo said that people in federal agencies and on Capitol Hill need to recognize continually the factors that matter for the recipients of health care or research. This requires constant work to reorient these individuals. With the Patient Protection and Affordable Care Act (ACA), for example, criteria will continue to be modified as the act is implemented. “Words are good,” said Trujillo, but “one has to see the implementation, the policies, the rules, and regulations that flow out of that. . . . Hopefully it will be positive, but the effect, I think, is still going to be relatively unknown.” Jamila Rashid, Office of Minority Health, emphasized the importance of community engagement. Such engagement puts everyone on a level playing field, not just inviting people to meetings but enabling them to understand the language and the landscape. For example, local community members can come together with researchers to train each other on the language that will be used in their partnership. Duran agreed that community engagement is the key: “We have to invest in community engagement. . . . We have to work together to ensure that culture is central.” She expressed the hope that some of the provi- sions of community prevention in the ACA can be targeted toward the use of culture to improve health. “Some of our excellent local, regional, and national Native institutions are looking at culture and trying to spread that message,” she stated. Trujillo urged that individuals remain consistent in their values and beliefs. “If we are inconsistent, that flows out from the work that we do and into others. . . . If those values are not there, all your research, all your publications, all your TV ads, etc., are meaningless. . . . Being able to work with others in an open and trustful manner is . . . one of the mainstays that I think all of us operate on.” Finally, Mildred Thompson, PolicyLink Center for Health and Place, who moderated the session, said that she had been inspired by the session, but the challenge is to return home and do things differently. How can the ideas discussed at the workshop be converted into policies that are sus- tainable and make a difference? How can practitioners be engaged? What examples are there of integrating indigenous healing practices with Western medicine? “What I’m saying is that I’m having more questions emerge for me than I have answers,” Thompson concluded.

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