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Doing Medical Research on American Indians' Terms

Bricks and mortar are not part of Sanford Research/University of South Dakota's (USD) plan to build the Collaborative Research Center for American Indian Health in Sioux Falls, South Dakota. Sanford has won a $13.5 million grant from the National Institutes of Health's National Institute on Minority Health and Health Disparities to improve health care in American Indian communities. The project will take a collaborative, multidisciplinary approach that includes health researchers, tribal health administrators, health care providers and spiritual leads as well as experts from public health, clinical psychology, epidemiology, family studies and human development, biostatistics, nursing medicine, nutrition and sociology. The goal is to facilitate within tribes the development of procedures, guidelines and trained personnel to approve and oversee outside entities doing medical research in three South Dakota American Indian communities—Cheyenne River Sioux, Oglala Sioux (Pine Ridge) and Rosebud Sioux—with more tribes, some from North Dakota and Minnesota, coming on board as the five-year project evolves.

"Each tribe," says principal investigator, Dr. Amy Elliott, "will have the opportunity to build the infrastructure they want for reviewing projects and giving information about the project back to health care researchers." Elliott is director of the Center for Health Outcomes and Prevention Research at Sanford Research/USD.

"In the past there have been too many instances of distorted research where researchers came to the wrong conclusions and used their data to back them up," says Gene Thin Elk, a member of the Rosebud Sioux Tribe and director of Native Student Services at USD. "We're coming out of an era of terrible research and outcomes for American Indian communities. Research is good, but only when it is done with respect."

This project started with respect right from the beginning. "To write the grant application, we sat down with many tribes and researchers to ask why did some research project work and some did not," says Elliott.

"Each tribe will receive the resources to hire personnel to help build their own research review infrastructure, which can help tribal councils decide whether or not to participate in a project," says Elliott. "The tribes will each have a seat on the executive steering committee.

"We have a community outreach component. We want to go everywhere to hear the needs people have. What is meaningful research to them?" The process will start with working with each tribe to create a community advisory board to help guide what the community outreach efforts would look like. "Bi-directional communication is key. Tribes will have a seat at the table and will help prioritize research needs," Elliott added.

The collaborative effort will reach beyond tribal and academic communities, says Elliott. "We will find people in the region who have done really good work and ask them to participate. Many collaborations will emerge." Some of the partners that have already signed on are South Dakota State University (SDSU); the USD; the University of North Dakota; North Dakota State University; Turtle Mountain Community College; Missouri Breaks, Inc.; Medicine Wheel, Inc.; Rapid City Regional Hospital; and Children’s Hospitals and Clinics of Minnesota.

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The NIH grant also funds major research projects, each of which has an intervention component.

Turtle Mountain Community College's Dr. Lyle Best is looking at how children can better manage their asthma. "We'll be working with 120 children with asthma in the Cheyenne River area and 240 normal children," says Best. Researchers will take air samples in the children's homes "to find asthma triggers such as dust mites, fumes, pets, chemicals from insulation and cigarette smoke." Blood samples from the kids will help determine how well their immune systems are functioning. DNA samples will look for changes in DNA that could make children more susceptible to asthma.

"Then we'll divide the 120 kids with asthma into two groups, one of which will receive intensive education on how to control their asthma" to see if they have fewer crises and fewer emergency room visits than children who do not receive the education. "If it becomes clear early on that the kids who receive the program are doing better, we will stop this part of the research and provide the program for all the kids," says Best.

Dr. Nancy Fahrenwald, dean of research at SDSU, will develop and disseminate cross-tribal educational resources to help kidney patients on dialysis who are still eligible for transplants to talk to family. "This research funding is just for education, not to get people transplants or to get them on the donor list. The desired outcome is changing knowledge and people having conversations about transplants," says Fahrenwald. "We need to get away from thinking the only legitimate outcomes are decreasing mortality or increasing [organ] donations." A third research project associated with the center looks at emergency room utilization and care for American Indian children.

Thin Elk is working on developing a curriculum to train researchers at Sanford, and eventually to provide a paradigm for training at other research institutions on matters such as how to approach tribal leaders in the proper way, how to present research projects in a culturally sensitive framework and how to work out the complexities of intellectual property rights.

Two other critical goals of the research center are to create opportunities for people to return to their communities and to train American Indian students in research. "We're bringing people who have finished their medical residencies, well-educated professionals, back home to Indian communities," says Elliott.

Best says, "We'll involve students at Turtle Mountain and Eagle Butte community colleges in research so they can learn how important it is to health care. Eagle Butte students will learn how to go out and contact the families. They will be trained to approach people ethically, to collect and analyze DNA samples and to do statistical analyses of the data."

This unique endeavor will provide benefits not only to the participating tribes but to the state and region, according to Sen. Tim Johnson, D-South Dakota. "I'm pleased that understanding and addressing minority health needs is a research priority for NIH," he said. "Sanford Research and the University of South Dakota have both demonstrated excellence in funding research initiatives and a commitment to address health disparities across our state."