A gentle blanket of clouds accompanied us on our way to the annual Fort Thompson Health Fair on the                                                                                  Crow Creek Reservation at the Indian Health Center, just outside of Chamberlain, South Dakota. I had been invited to join the excursion just a day before as part of my REU (Research Experience for Undergraduates) in Native American Population Health. I’m from Connecticut and love to travel and embrace diverse cultures so this was an easy ‘yes’ for me.    

I had done my research the night before the Health Fair so that I could learn about Crow Creek Reservation. I learned that the Crow Creek Reservation lies adjacent to the Big Bend Dam, which was constructed by the US Army Corps of Engineers in the 1960s as part of the Pick-Sloan Plan authorized by the Flood Control Act of 1944. The Pick-Sloan plan was enacted to utilize the water resources of the Missouri River Basin in order to provide a watershed to distant areas affected by drought and also to provide a source of energy through the use of a dam. The resulting reservoir, Lake Sharpe, subsequently created a series of issues for those living nearby causing members of the Crow Creek/Fort Thompson and Lower Brule reservations to become dislocated. The now water-covered fertile lands resulted in the loss of farming potential for these tribes and equally negatively affected economic conditions for those inhabiting this area of land which spans nearly 57,000 acres. The land had been previously used to produce food and medicine for locals. Overall, the size of the Crow Creek reservation was dramatically reduced.

As I entered the Health Fair at IHS, I was greeted by particularly happy and smiling faces as well as lots of color and warm, engaging and delightful personalities. I knew I found my niche and that I was in the right place. It was a very happy day indeed. The sun was shining the most it had in a long while. I was pleasantly surprised by how many attendees (local Fort Thompson residents and guests) were curious to find out what our booth was about. It was personally my first time visiting a Native American community so it was a particularly unique experience for me. The host humored us with his jokes and focused us with his wisdom as he blessed the day ahead and all those who attended that they be in good health. Attendees visited dozens of diverse booths and various buildings such as the Wowasake Wellness Center, which includes a full fitness room. Overall, the fair was information dense and prompted many conversations on diverse topics relating to health and wellness promotion.

In the end, I was left with profound feelings of hope and assurance that our research is moving in the right direction. Aside from political and sovereignty issues related to approving tribal research, I was amazed at how hungry individuals were to learn about and embrace novel topics of health and wellness. Ecstatic smiles thanked and commended the lead researchers at our booth (Char Green-Maximo and Jessica Heinzmann) for the work they do. We must continue to break the stigma of ‘Western’ research in tribal communities by showing our ‘humanness’ and connecting with locals. Forging long-term sustainable and healthy relationships is the foundation to solidarity. Again, it’s the intentions one sets that determines the outcomes. I leave this post with one message, one I was reminded of as we began our trip back to Sioux Falls: to act with Dignity, honor and respect and to embrace those cultures that stand before us and to be inclusive of the values of all individuals especially those of the Native Americans who embody South Dakota.

By: Kelly Bielonko | Eastern Connecticut State University | SURE Student | Griese Lab

It is finally feeling like summer here in Sioux Falls; the sun is out, the humidity is making my hair frizz, and our summer students are here! We have 10 amazing undergraduates working within the Population Health Group until August 10. They are here through the Summer Undergraduate Research Experience (SURE). I, too, was a SURE student in 2011, and I really love being able to be back here in a mentoring role. We will have seven of the students located at our Sioux Falls office and three of them are off-site at our Pine Ridge and Rosebud sites.

While here, they will participate in everything that we do in our day-to-day work plus a few extra things (GRE prep, anyone?) and some of them will be able to gain hands-on experience with data collection and community engagement in our Native American and rural populations. They have already jumped in to their work and integrated themselves into our group. Writing a blog post was completely optional for them but I was able to convince a few of them that it would be the most fun they had this summer.

There are a variety of topics that they have picked out to write on, and I can’t wait to hear their perspectives on things. Many of them are from out-of-state and some have never worked with or in Native American settings before; I’ve already had great discussions with them about their experiences thus far. They are here for just 10 weeks and will be working on various projects that we have going on in our group, and I thought it would be a great opportunity to bring some more diverse perspectives into the blogs. They all come from different places and have unique ideas and experiences that I’m looking forward to sharing with you all!

Even though it is summer, we are all keeping quite busy! 

 By: Michaela Seiber, MPH | Sisseton-Wahpeton Oyate | Population Health Group

I know everyone has been eagerly awaiting the next blog post; this busy spring is melting into a busy summer, as I’m sure many of you can relate to. There has been a lot going on here at Sanford Research with people traveling to conferences, writing grants, and most excitingly: preparing for our summer interns that will be arriving in a few short weeks! I hope to have some of them come up with ideas and try their hand at blogging – so stay tuned for that.

For this post, I want to talk about how important it is for tribes and people working with tribes to be involved in national conversations. A few weeks ago, I spent five days in Boston attending conferences and workshops put on by the Public Responsibility in Medicine and Research (PRIM&R) and the Office for Human Research Protections (OHRP). In 2009, I spent the summer in Boston as part of the Four Directions Summer Research Program, so it was nice to be back and pretend as if I knew how to use the subway. Anyway, both PRIM&R and OHRP offer spaces for people involved in research to seek guidance on research ethics and regulations, with the OHRP providing support and guidance for all of the federal agencies that conduct research. I think these topic areas can be heavy and may be boring for some people, so I really was not sure what to expect by attending the conference and two days of workshops.

First, I had fun and I gained some new perspectives when it comes to conducting research with vulnerable populations, the Common Rule, and the informed consent process. The hosts of the events were so welcoming and accommodating and really, who would not enjoy hanging out in Boston for a few days? While I did have fun and had a great time, this was really an uncomfortable experience for me. I felt out of place and maybe a little over-my-head in some of these conversations.

I’ve been reflecting back on this to try to figure out why I felt this way when everyone there was kind and welcoming and I think it was simply because I was the only one there who worked with tribal communities. You might be wondering why this would make a difference or why it would affect my experience that much, and it really comes down to tribal sovereignty and the different lens that tribal research review boards look at research ethics and research protections. I’m used to almost entirely thinking of research from this vantage point, so it was disorienting to be in a space talking about research ethics and regulations that didn’t focus on tribal efforts to manage research.

The speakers that PRIM&R and OHRP brought in were obviously knowledgeable about research ethics and regulations but really only looked at research from a Western perspective. All of the conversations I overheard and was involved in left out the unique perspectives of tribal communities in reviewing research. This made me doubt myself at times but it also illustrated just how vital it is for those of us who are tribal members working in research or those of us who are researchers working with tribal communities to be a part of these bigger conversations. We must keep making ourselves visible and keep talking about research ethics from the perspective of tribal communities, even if it is a little uncomfortable.

By: Michaela Seiber, MPH | Sisseton-Wahpeton Oyate | CRCAIH Regulatory Knowledge Core | CHOPR READ Core | This email address is being protected from spambots. You need JavaScript enabled to view it.

In this poignant, informative, and engaging presentation, Dr. Boyer discussed the importance of conducting genetics research with cultural responsivity and community inclusiveness and responsiveness. In summation, this study provided the scientific evidence for the things the Yup’ik elders already knew. That is, that an active lifestyle and a nutritional diet of traditional foods are nutrigenomic protective factors.  

He started by giving a brief overview of the development of the Center for Alaska Native Health Research (CANHR), which was established in 2001. They started hosting genetic education workshops in 2002, and data collection began in 2003. He then discussed shared their cultural values of respect, responsibility, and reciprocity and their journey building trusting partnerships with Yup’ik peoples in the YK Delta.

Notably, the Yup’ik people have a diabetes prevalence rate of approximately half of the rest of the U.S. population. Therefore, they were especially interested in finding out why this is the case. What are their mechanisms of protection?

With respect to physical activity, their key finding was that constantly moving and keeping busy is better than going out and getting a lot of exercise. But what about diet? How does a traditional diet act as a protective factor?

If you ask a Yup’ik person what they eat, they’ll likely say, “Well, it depends.” That being said, Yup’ik people don’t eat a lot of leafy green vegetables, but they do eat a lot of oceanic fish. As one Yup’ik woman stated, “I’m a hooker. I love hooking fish!” Their consumption of fish was one of the most important, if not the most important, protective factors against disease.

One of the concerns expressed by Yup’ik elders was for the younger generation. They noted that older people tend to have a more traditional diet, but youth’s intake of traditional foods is declining.

Another key part of his presentation was the ethics of dissemination. They formed a Community Planning Group which was composed of past participants in their genetic studies and explored Yup’ik understandings of heredity, discussed sharing research outcomes, prioritized future research, and discussed Oregon Health & Science University and precision medicine.

Through these conversations, they learned that Yup’ik people are not opposed to genetics research, but they want to have a say in data stewardship. People want to know their health research results, particularly if there’s something that can be done about it. The desire to focus on youth was also expressed, as well as providers being a key audience, the use of everyday language, and having face-to-face discussions.

Dr. Boyer ended his talk by reiterating the importance of long-term, trusting partnerships as being fundamental when conducting health research and the role of face-to-face communication in facilitating bi-directional communication and mutual reciprocity and respect.

By: Tracey McMahon, MS | Research Project Manager | Kenyon Lab | Sanford Research