New Toolkit Helps Tribes Take More Control of Research

By: Alex Strauss

American Indian tribes have long been a popular focus for population research studies. Too often, however, the findings are never even shared with the tribe, let alone used to improve tribal health.

But an initiative called The Collaborative Research Center for American Indian Health (CRCAIH), a project funded through the NIH since 2012, is designed to change that. In addition to funding a research coordinator for each tribe, the group, which includes representatives from Sanford Health and six tribal partners, has developed an Institutional Review Board (IRB) “tool kit” that tribes can use to take more control of health research and its application.

“The original goal of CRCAIH [pronounced “ker-kuh”], was to help build tribal research 

 infrastructure with the long term goal of reducing health disparities over time,” explains Jyoti Angal with CRCAIH. As Angal explains, there are three “cores” to CRCAIH: a regulatory knowledge core, a culture, science, and bioethics core, and a methodology core. She directs the regulatory knowledge core which put together the new toolkit.

“There is a history of research abuse in native communities largely because they were not actively involved in that research,” says Angal. “The tribe never felt as though they had ownership or governance.”

But these days, Angal says, tribes are more interested in taking an active role in what is being studied and in how it might be used to benefit tribal members. Based on feedback from their tribal partners (each of which had a different level of sophistication around research), the free CRCAIH IRB toolkit contains templates, forms, and how-to documents for setting up a tribal IRB and reviewing research proposals. It is free and available online.

Before the Sisseton Wahpeton Oyate (formerly the Sisseton Wahpeton Sioux Tribe) in Sisseton, South Dakota began using the toolkit two years ago, they had few rules to govern research.

“Some of the protocols would go to our human services board, but they didn’t have any knowledge of regulations surrounding research,” says Heather Larsen, the tribe’s Research Specialist and IRB Coordinator. “A lot of times a research project would be approved and the researcher would conduct their research and just never come back. Our tribe wouldn’t hear any of the findings or be able to use the findings or anything like that.”

It’s no wonder, says Larsen, that research has had a negative reputation in Indian country. “We call them ‘helicopter researchers’ who come in and do their study and get what they need and then leave right away,” she says.

But thanks to CRCAIH, attitudes and actions are changing. The Sisseton Wahpeton Oyate now has its own IRB and a Research Review Board which has been meeting monthly since 2014. They’ve established research codes and tribal law on research and, with their IRB in place, have even been able to obtain a grant to conduct their own research on services they provide to parents of newborns.

“For decades, research has been conducted on us but not by us,” says Larsen, who says she is now frequently contacted by other tribes for advice on research. “There is beginning to be a shift now and they are beginning to take ownership and see the value of research and in the data that we are collecting ourselves.”

“The unique thing about the CRCAIH toolkit is that it factors in the role of the community and the impact on the community,” says Angal.  “It has created buzz around the fact that research is important and that research regulation is necessary.”

The CRCAIH toolkit has even caught the attention of the NIH and its developers were invited to present on it at the 2015 Native Research Network Conference.

“I think it will have a long term impact on tribal health,” says Larsen.