Prominent American Indian/Alaska Native Researchers Highlight Discoveries, Challenges at NIH Forum

Addressing the need for culturally-appropriate health research within American Indian/Alaska Native (AI/AN) communities, a recent research forum provided an opportunity for researchers to highlight their studies and share challenges in conducting biomedical research both inside and outside the AI/AN communities. Held on NIH's campus, the AI/AN Research Forum featured presentations from several prominent NIH-funded AI/AN researchers and a panel discussion on the challenges in conducting biomedical research and developing a research career.

Leading the efforts in health disparities science, the National Institute on Minority Health and Health Disparities (NIMHD) hosted the forum to highlight the rigorous studies taking place in AI/AN communities, understand the challenges researchers face in these settings, and look at what the NIH can do to address them, including new research collaborations and efforts to increase the number of AI/AN researchers. During her opening remarks, NIMHD Acting Director Dr. Yvonne T. Maddox recognized the significant contributions to biomedical research made through research activities within native communities, citing developments and advances in community-based research practice and understanding of the impact of social determinants of health on health outcomes.

"We have outstanding researchers here with us today," hailed Dr. Maddox as she welcomed participants. "We're here to learn about some of the best research taking place in the U.S. and we want to know what are the critical issues that we need to address to move forward."

Recognizing workforce diversity as one of the critical issues impacting biomedical research progress in AI/AN communities, Dr. Lawrence Tabak, NIH principal deputy director, acknowledged the magnitude of such a forum.

"This is a unique moment and opportunity to try to find greater ways of helping those underserved in research," said Tabak. "As we recognize contributions made, we also have to acknowledge the challenges day-to-day. We need to diversify the workforce to ensure we have everyone participating. To not have a diverse workforce really threatens our mission."

Key issues discussed during the forum included lessons learned that AI/AN researchers faced in conducting biomedical research and suggestions for unique funding opportunities and mechanisms based on challenges in conducting biomedical research.

Tracing one path in his scientific journey over the last 35 years, speaker and panelist Dr. Spero M. Manson, distinguished professor, University of Colorado Denver, addressed his key findings from a series of studies that generated new knowledge, informed programmatic applications, and stimulated other lines of inquiry. He described his psychiatric epidemiological work among several of the largest reservation-based tribes in the U.S. His findings from these studies informed major innovations in reimbursement for care for traditional treatment of post-traumatic stress disorder in Vietnam veterans and creative approaches to addressing the unmet mental health needs of this special population. He summarized current extensions of this work that underscore the contributions of trauma to risk of cardiovascular disease and of depression to the treatment of diabetes.

Manson also expressed his concerns with the lack of diversity among peer reviewers and attention to minority inclusion in the scientific review process and in the NIH workforce, lack of NIH engagement with tribes as sovereign nations, lack of capacity for reviewers to understand measurement issues in small population science addressed in AI/AN research, and the difficulties of obtaining institutional review board approval and informed consent in tribal communities.

"Native researchers get caught up betwixt and between," Mason said. "People like me need [NIH's] support. We look at you as champions. I need NIH's companionship to explain to our [NIH] leadership the desirability of diversity in science."

Fellow speaker and panelist Dr. Jeffrey Henderson, president and CEO, Black Hills Center for American Indian Health, spoke about cancer in the AI/AN communities. According to Henderson, racial misclassification and poor cancer registry inclusion inaccurately showed that the AI/AN community has low cancer rates. However, recent research paints a very different picture of cancer in the communities, showing a profound geographic variation of cancer incidence and mortality rates across six major geographic regions of the United States. For example, for some tumor types, such as kidney, stomach and cervix, AI/ANs have higher cancer incidence rates than non-Hispanic whites. For this reason, non-Hispanic whites are not always an adequate group for comparison. More meaningful comparisons may be within group comparisons.

In addition, these findings show very high rates of some cancer types in AI/AN communities in certain geographic regions of the United States and very low rates in others. This calls for a big next step, which Henderson said is to examine the causes of the profound geographic variation and design an integrated set of case-control studies. Henderson also expressed his concern with community-based initiatives in the AI/AN communities.

"In a variety of different discussions around the Institutes, I think we realize community-based initiatives have a primary role," he said. "Community-based organizations are not being as well supported. I would like to see a bigger discussion on how we could better support community-based organizations."

Dr. Valarie Blue Bird Jernigan, associate professor, University of Oklahoma Health Sciences Center, also discussed the role of communities as she spoke about the need for community-based participatory policy work to address obesity in tribal nations. According to her, the burdens of obesity, diabetes and hypertension in American Indian people in Oklahoma exceed those of the general U.S. population. Jernigan saw that few studies have assessed the environmental correlates of obesity in tribal communities, and none have developed interventions to improve the food environments of Oklahoma tribal nations. Therefore, she set to turn this around with the Tribal Health and Resilience in Vulnerable Environments (THRIVE) study.

The participatory research study employs community-based participatory policy work methodologies with the Chickasaw and Choctaw Nations of Oklahoma. Jernigan explained that the study is implementing healthy "makeovers" within tribally-owned and operated convenience stores to increase fruit and vegetable consumption among tribal members.

Other speakers included Dr. James Allen, psychology professor, University of Alaska Fairbanks; Dr. Bonnie Duran, associate professor and adjunct associate professor, University of Washington; and Dr. Stacey Jolly, assistant professor of medicine, Case Western Reserve University.

The afternoon panel looked at how to navigate challenges in conducting research. Led by Dr. Sally Rockey, NIH deputy director for Extramural Research, topics ranged from a lack of AI/AN mentors and role models, to the unique and compelling role that NIH plays in promoting diversity in the biomedical, behavioral, clinical, and social sciences research workforce.

"Even though scientists have nationalities, science doesn't have a nationality," said Rockey. "We're trying to find a way to pick up all the great science that gets left behind."

Along with Manson and Henderson, panelists included Dr. Ronny Bell, professor of public health sciences, Wake Forest School of Medicine; Dr. Maria Yellow Horse Brave Heart, associate professor of psychiatry and director of Native American and Disparities Research, University of New Mexico; Dr. Denise Dillard, director of research, Southcentral Foundation; and Dr. Jada Brooks, assistant professor, University of North Carolina at Chapel Hill.

Other participants of the forum included Tribal representatives and several federal agency representatives including the Indian Health Service, the Food and Drug Administration, the Health Resources and Services Administration, and the Agency for Healthcare Research and Quality along with the NIH directors Dr. Richard Nakamura, Center for Scientific Review; Dr. Josephine Briggs, National Center for Complementary and Integrative Health; and Dr. Patricia Grady, National Institute of Nursing Research.