Beyond Health Equity: Achieving Wellness Within American Indian and Alaska Native Communities

Indigenous peoples across the globe have higher morbidity and mortality rates than their non-Indigenous counterparts.¹ The nine-year gap in life expectancy between New Zealand’s Indigenous Maori population and other New Zealanders has led to sweeping primary care reforms to improve health and reduce disparities.^2,3 The seven-year gap between Canada’s First Nations, Metis, and Inuit populations and other Canadians led to the dedication of one of the 13 Canadian Institutes of Health Research, the Institute of Aboriginal Peoples’ Health, solely to improving the health of Canada’s Indigenous peoples.⁴ Finally, the shameful 17-year gap in life expectancy between Indigenous and non-Indigenous Australians led to a partnership in 2007 between all levels of government to “Close the Gap” on Indigenous disadvantage, allocating more than five billion dollars in additional resources to halve the mortality rate of Indigenous children within 10 years.⁵

In the United States, where American Indians and Alaska Natives (AI/ANs) have the lowest life expectancy of any racial/ethnic group,⁶ equivalent large-scale efforts do not exist. Health disparities among AI/ANs not only persist but are also worsening in some communities.^7,8 Yet, as life expectancy also stagnates or worsens for large segments of the US population^9,10 achieving health equity for AI/ANs no longer seems a laudable goal. A new approach to health disparities intervention research is required.

Tribal communities and research scientists are working in partnership with the National Institutes of Health (NIH) to implement the Interventions for Health Promotion and Disease Prevention in Native American Populations initiative, launched in 2011 (PAR-11-346) and reissued in 2014 (PAR-14-260). Since 70% of AI/ANs live in urban areas,¹¹ this announcement is also directed at developing interventions among urban Indians to improve overall health. Diverse projects being supported include healthy “makeovers” in tribally owned convenience stores in Oklahoma, indoor air quality improvement interventions in the Northern Plains, and substance abuse prevention in tribal colleges and urban areas, to name a few. Although the first round of funded projects are only now starting to collect and analyze data, the initiative represents a shift in how research is conducted with tribal communities.¹² Specifically, the initiative incorporates the collective recommendations of tribal leaders and research scientists to use community-driven processes, implement broad and diverse multisector research and practice partnerships, intervene on the social determinants of health, and support tribal research infrastructures, including the development of a cadre of AI/AN researchers.

USE COMMUNITY-DRIVEN PROCESSES

Many tribal communities harbor a deep-rooted mistrust for medical research. Early scientific publications depicted Native peoples as primitive and susceptible to illness, victims who needed to be cared for.^13–19 Such depictions, and the attitudes they encapsulate, contributed to the breakdown of Native life-worlds, cultures, and traditions. In this way, the scientific establishment exacerbated Native health disparities while inspiring mistrust for research. As recently as 2010, Arizona State University was obliged to pay $700 000 to members of the Havasupai Tribe as a legal settlement for improper use of their blood samples by university researchers funded by NIH.²⁰

Community-based participatory research (CBPR), also called “action research” is an alternative research paradigm that integrates education, research, and social action to improve health and reduce health disparities. The principles of CBPR include colearning, mutual benefit, and long-term commitment. Notably, CBPR is an orientation to research recommended by the Institutes of Medicine.²¹

The new NIH initiative advocates that all interventions use a CBPR orientation in which the tribes and communities are equal partners with academic and research institutions.¹² This approach is congruent with the policies of many tribal research review boards²² and shown to be effective in addressing health disparities.²³ Only by regarding tribal nations and communities as equal partners, addressing research agendas that incorporate Indigenous ways of knowing and reflect community priorities, and focusing on research that embraces action to improve health can wellness in AI/AN communities be realized.

SUPPORT MULTISECTOR RESEARCH AND PRACTICE PARTNERSHIPS

As part of this initiative, tribal communities are engaging with partners in the housing, business, transportation, economic development, and law sectors to intervene upon the social determinants of health.²⁴ For many tribes, their status as sovereign nations makes them uniquely positioned to develop and support these multisector research and practice partnerships and have a real and significant impact on the health of their citizens through the tribal policymaking process.²⁵ Current projects are assessing the costs of diet-related disparities to tribal health care systems and workforces and the health impacts of tribal economic policies. The wealth of knowledge that exists among tribal planners, health practitioners, and policymakers is being engaged to advance transdisciplinary science in AI/AN communities.²⁶

The Interventions for Health Promotion and Disease Prevention in Native American Populations initiative connects the network of NIH-funded researchers and communities to provide a venue for sharing scientific findings, facilitating synergistic interactions across projects and disciplines, and developing research interest groups. This network will also foster community-to-community capacity building by tribal leaders and practitioners. Research protocols implemented through this initiative are working to strengthen tribal community capacity, devise new approaches for community involvement, and invest in human capital that will continue to serve community needs after NIH funding ends.

SUPPORT EMERGING TRIBAL RESEARCH INFRASTRUCTURES

One positive outcome of the unfortunate history of medical research in tribal communities is the emergence of tribal health research infrastructures, such as tribal institutional review boards or other formal research review boards, in communities with the capacity to lead their own research agendas.²⁷ The NIH supports the development of tribal research infrastructures through its funding of the Native American Research Centers for Health (NARCH), initiated in 2001, and administered by the Indian Health Service. The NARCH program requires that tribes or tribal entities serve as the Principal Investigators of NARCH proposals, thereby building tribal research capacity.

The Interventions for Health Promotion and Disease Prevention in Native American Populations initiative further supports emerging tribal research infrastructures, and tribal sovereignty, by acknowledging within the funding opportunity announcement,

In recognizing that Tribal governments are legal sovereign nations, potential partners should be informed that tribes may seek ownership or control of all data and all biological samples; therefore, universities and other partners should be prepared to negotiate data sharing and biological sample sharing agreements with tribes/Tribal government(s).¹²

Here, the NIH explicitly recognizes tribal sovereignty, and for the first time frames it as a rationale for tribal ownership of research data and biological samples. As exemplified by the experience of the Havasupai Tribe, it is vital for tribes to retain ownership and control of their health data while negotiating equitable agreements to share these data in beneficial ways.

To that end, the NIH removed a controversial clause from the first of the two funding opportunity announcements for this initiative, which required tribal partners to agree to “passive approval” of research methods. Passive approval refers to situations where researchers and communities set a deadline for approval or rejection of protocols, articles, and other elements of funded studies. If a tribe did not respond by the deadline, approval was assumed. However, as several tribal leaders argued, mandating passive approval negates the role of tribal sovereignty and implies that tribes cannot be trusted to fulfill their research obligations. While there remains disagreement over the intent of the clause, the NIH responded to the organized advocacy by tribal partnerships and removed this language from the most recently issued announcement.

Not every tribe has achieved, or even strives for, this type of research infrastructure and the creation of its own institutional review board. Nonetheless, reviewers must be educated about the diversity that exists among AI/AN communities, as illustrated by the recent experience of a large tribal nation.

Tribal leaders developed an NIH proposal by using community-based methods. Equipped with a tribal institutional review board and a newly created tribal research division, they proposed to study the acceptability of a central repository or “biobank” for human genetic samples. The application received high scores in every category, but was marked down by NIH peer reviewers who believed it was not community driven. The applicants themselves, primarily Native researchers, are included among the authors of this commentary. Although the applicants carefully assessed community priorities before crafting the proposal, one reviewer concluded that Native people would never prioritize biobanking.

The applicants welcomed the reviewers’ scientific criticism, but not their cultural presumptions and lack of cultural humility. As one of the tribal applicants stated,

We don’t all do canoe journeys. We don’t all want to do biobanking. Some of us may want to do both. We are all unique, with different needs and capacities. Criticize us for our science, not for having different priorities and capabilities than what you presume Native people have.

The NIH is currently addressing the need to educate reviewers by establishing, for the first time, an NIH Tribal Consultation Advisory Committee as a complementary venue for the exchange of information between NIH and tribal representatives. The committee will support, but not supplant, any government-to-government consultation activities that the NIH undertakes.

Lastly, the new initiative supports Native investigators by sponsoring health research and interventions in tribal settings, thereby upholding the mission of existing NIH-funded training programs for minority researchers. One such effort is the NIH-funded Native Investigator Development Program,²⁸ which trains junior Native scholars in rigorous research methods so they can successfully compete for independent research funding. Such efforts are essential, given the paucity of Native investigators with federal funding. Among the 37 000 NIH grants awarded in 2006, only 24 went to Native Principal Investigators.²⁹ Similarly, an article on the probability of receiving R01 funding by race and ethnicity did not even include AI/ANs in its published tables because of inadequate representation; an online-only supplement indicated that just 41 AI/AN PhDs submitted an R01 over a six-year period.³⁰ The development of a cadre of Native scholars that can work in partnership with tribal partners to conduct action-focused research will strengthen and cultivate wellness in tribal communities.

DARE TO DREAM

In 2007, at the launching of Australia’s “Close the Gap” Campaign for Indigenous Health Equality, Tom Calma, chair of the campaign and the Aboriginal Social Justice Commissioner, referred to the initiative as

the moment when we dared to take our dreams of a future in which Indigenous and non- Indigenous Australians stand as equals. . . to bring Indigenous health inequality to an end within our lifetimes.⁵

The health disparities among Indigenous peoples persist despite differences in environments and genetics.¹ The urban AI/AN population experiences health disparities that are as significant as those faced by rural and reservation AI/ANs.³¹ In a nation that spends approximately half as much per capita for health care for AI/ANs through the Indian Health Services as it does for federal employees through the Federal Employee Health Benefits program,³² we wonder if we can also dare to dream. For many of us who are AI/AN, we have experienced the shame and humiliation of second-class status. We have waited all day in an Indian Health Services clinic only to be turned away because there weren’t enough health care providers. We have lost our loved ones too soon. The root causes of health disparities, the disparities in money, power, and resources that have existed since colonization, must be addressed to improve the health of the AI/AN population.

Yes we will dream. And we will continue to work in partnership with tribal leaders and practitioners and our non-Native allies, including those who have led this initiative within NIH, who dream with us and work tirelessly to not only close the gap and achieve health equity but to strengthen and support true wellness in our communities.