‘What I wish researchers understood’: Insights from Mayo Clinic Tribal IRB Summit

Feb 5 11:14am | Kanaaz Pereira, Connect Moderator | @kanaazpereira

"I think there is untapped potential in collaborating in research with Native nations in the U.S.," says Laszlo Vaszar, M.D., a pulmonologist from Mayo Clinic in Arizona, who attended a recent summit to build relationships and foster the growth of research involving Indigenous people in Minnesota.Tonya Connor, left, a predoctoral student in Indigenous Health at the University of North Dakota; Heather Larsen, research review board member, Sisseton-Wahpeton Oyate; Melissa Buffalo, CEO, American Indian Cancer Foundation; Annie Rusk, M.D., Mayo Clinic Pulmonologist, Blackfeet Nation.

American Indian tribal leaders and health experts gathered with Mayo Clinic researchers at the Mayo Clinic Tribal Institutional Review Board Summit, hosted by the Mille Lacs Band of Ojibwe.

Speakers and participants discussed issues of tribal sovereignty and ownership of research data, community health priorities, and the checkered history of healthcare and research in Indigenous communities.

While Dr. Vaszar sees untapped potential, he adds that there is a need for researchers to approach Indigenous communities with respect, humility and the desire to learn. He notes that researchers should allow tribes to grow their own research capacity and endorse their efforts to set research priorities for the benefit of their communities.

Tribal IRBs offer oversight and protection

Many tribes have their own institutional review boards or research oversight groups. The purpose of these groups is to protect the privacy, rights and welfare of people who participate in research.

Heather Larsen spoke at the summit about her experience creating a research oversight infrastructure and establishing an Institutional Review Board for her tribe, the Sisseton-Wahpeton Oyate of the Lake Traverse Reservation. Larsen is a member of her tribe's research oversight group.

"I wish every tribe had a tribal IRB, no matter how much research is happening, because that oversight and those protections are so important to their sovereignty, data ownership and the protection of their members," Larsen says.

These groups review and oversee research that occurs on tribal lands or in tribal communities, involving tribal citizens or resources. In addition, they prioritize the inclusion of Indigenous culture and values in research, ensure Native nations benefit from research, and encourage the development of Indigenous researchers, tribal-run studies and tribal-owned research resources.

Larsen and other team members have published what they've learned about building a tribal research infrastructure and describing the role of tribal IRBs in the American Indian and Alaska Native Mental Health Research Journal. Their goal is to share this important knowledge with the larger scientific community, particularly with other tribes interested in starting their own boards.

Dr. Vaszar says he was struck by how presenters at the summit spoke about their shared historical trauma related to research. "They said that, for them, the past is not even the past," he recounts. "That was a helpful way to put it in perspective."

Within this context, Dr. Vaszar says investigators should prioritize learning about and building relationships with the tribes.

Larsen has this advice when asked, "What do you wish researchers understood before they approach a tribe about research?"

Learn about the specific tribe you want to work with — their culture, land and history. Find out how the tribal government is structured and if they have an institutional review board.
Think about how you will benefit from the research, personally or professionally. Tribal IRBs often ask researchers about the reciprocal benefits of research and assess investigators on their ability to answer this question.
Learn the history of research in Indigenous communities: It's important to demonstrate that you understand why tribes have strong requirements regarding research oversight and protections.
Expect research to be tailored to community needs: Tribal IRBs often make changes or modifications to protocols designed to align the research with tribal priorities and health needs.

In addition, Larsen says, be aware that when allocating resources, many tribes may consider research a lower priority than providing everyday healthcare to their citizens.

"To construct research that will benefit the community, researchers need to understand the full picture," says Guthrie Capossela, a Mayo Clinic community engagement coordinator and an enrolled member of the Standing Rock Sioux Tribe. "There's no shortcut — it takes time and a commitment to relationship-building."

Improving clarity, real-world impact of research

Dr. Vaszar sees opportunities to improve collaboration between researchers and Indigenous communities, and to better align research to tribal health priorities. He perceives a frequent disconnect between how researchers and tribal health leaders conceptualize research.

"In my mind, there is a distinct difference between the delivery of healthcare services and the conduct of research, which generates generalizable data related to human health," he says.

However, based on the discussions at the summit, he observed that many of the tribal health leaders don't separate the two. To address this issue, Dr. Vaszar recommends striving for greater clarity when communicating about the aims of research studies.

Dr. Vaszar also foresees potential for pragmatic and decentralized clinical trial designs in Indigenous communities. Due to their emphasis on studying interventions in real-life situations, these types of clinical trials can create generalizable research data while also delivering needed healthcare services.

"These are real-life trials, real-life questions that can have an immediate impact," says Dr. Vaszar. "I think these kinds of trials are uniquely suited to tribal needs."

Learn more about research including Indigenous populations:

Mayo Clinic seeks diverse perspectives and experiences to inform research for the benefit of people everywhere. Mayo's Native American Research Outreach initiative facilitates and sustains community engagement and program development involving Indigenous populations in the U.S.

This initiative jointly supports research activities in the Mayo Clinic Comprehensive Cancer Center Community Outreach and Engagement program and the Center for Clinical and Translational Science Community-Engaged Research program. In particular, the initiative focuses on existing partnerships between Mayo Clinic and the 11 federally recognized tribes in Minnesota, as well as with Urban Indian Health Services facilities in the state.

A variety of research and education resources are available to Mayo investigators who seek to engage Indigenous communities. These include:

Community-Engaged Research Consultation Request: Researchers interested in connecting with a tribe may request a consultation.
Healthy Nations Advisory Board: This community advisory board advises and educates Mayo Clinic staff on the health priorities and concerns of Native nations and on urban Indian Health Service programs. The board includes Native healthcare professionals, directors and representatives from the Northern Plains Region of the Indian Health Service.
Indigenous Health Topics Speaker Series: This monthly seminar features internal and external experts on health topics relevant to Indigenous populations in the U.S. To learn more or sign up to receive emails about future sessions, contact Corinna Sabaque, senior research program coordinator, Center for Health Equity and Community Engagement Research.
Recommended training: Research with Native American Communities webinar, offered by the Collaborative Institutional Training Initiative.

Staff interested in learning more should start by submitting a Community-Engaged Research consultation request.