Bridging the Chasm Between Genomic Discovery and Translation

April 18, 2018

Dr. Kinney

Wednesday morning began with a presentation by Dr. Anita Kinney, a population scientist investigating topics in the area of cancer prevention and control for over 25 years with a focus on behavioral, social (ELSI) and care delivery genomics research for over two decades. Her presentation titled "Bridging the Chasm between Genomic Discovery and Translation: Communication, Behavior, and Care Delivery" discussed the intrapersonal, social, system-level and policy level issues that influence the translation of genomic-based precision prevention and health equity.

She began by explaining that precision prevention considers an individual's unique cancer risk profile based on their genome, behavioral issues, socioeconomic and cultural factors, epidemiologic factors, and community engagement. She then addressed the challenges of translating genomic testing of the individual to the population. An individual (patient) interacts with their healthcare provider, family, and culture to discuss health issues, this then expands to interactions with medical institutions and health insurance plans, and further expands to interactions with the community and policy.

Priority areas in cancer prevention, detection, and survivorship include effective communication, expanding the reach to underserved and under-represented groups, and improving motivational impact of behavior change intervention. She discussed ethics and barriers to genomic translation in AI/AN populations, including the population's mistrust of genetic research, such as privacy, misuse, and fear of stigmatizing interpretations of genetic information. She addressed the impact of the paradigm shift the field is experiencing moving away from syndrome-based testing to multi-gene testing with multi-gene panels. She discussed her research into alternative ways to communicate with rural populations with the family CARE cluster randomized trial, which asked the question: Is a theoretically-based remote personalized cancer risk communication intervention (TeleCARE) more effective than generic print on colonoscopy uptake? They found that the teleCARE intervention participants were more likely to get a screening versus participants who just received generic print on colonoscopy uptake. Dr. Kinney concluded her presentation by introducing various ongoing projects based off of her teleCARE intervention and a brief overview of the exciting new applications of epigenetics to genetic counseling.

By: Elizabeth Roden, BS | Population Health - Evaluation | Graduate Student | Sanford Research

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Sharing Our Stories: CRCAIH Tribal Partners

April 17, 2018

Tribal Partners

After a delicious lunch of Three Sisters Stew, buffalo (and vegan!) meatballs, and cornbread, and following a delightful, warm, and humor-filled musical performance by Jackie Bird, a Dakota and Hidatsa Native American Performer, we all returned to the lecture hall for an afternoon session featuring four CRCAIH Tribal Partners, Kathryn ("Katie") Blindman (OST), Anita Frederick (TMBCI), Heather Larsen (SWO), and Simone Bordeaux (RST) (Patti DuFault from Fond du Lac, and Ashley Parisien from Turtle Mountain couldn't make it due to the snow).

Melissa Buffalo moderated, and began by introducing CRCAIH's aims, cores, and divisions. CRCAIH was founded in 2012 with the expressed two-pronged goal of increasing tribal communities' capacity for research, and increasing the amount of quality, innovative research being conducted in American Indian health. There were two tribal partners written into the original contract, the Oglala Sioux Tribe and the Cheyenne River Sioux Tribe, and, since then, five tribes have been added to the partnership.

This is the last year of the CRCAIH grant, and the purpose of the session was, more than anything, to convey the importance of these partnerships over the past five years for establishing and strengthening tribal research infrastructure. The CRCAIH partners were able to collaborate with one another, and to utilize the CRCAIH Cores---the Collection Methods, Management and Analysis of Data Core, to help plan and design research projects; and the Research Ethics and Dissemination Core, to provide research support, for example---in order to create and strengthen their individual tribal IRBs/RRBs.

Amidst discussions about resource sharing, community needs assessments, networking, and retreats, Heather Larsen took a moment to explain just how helpful these collaborative partnerships have been to the work she does in her tribal community. The tribal partner collaboration was not an expected outcome of the grant, she pointed out, but over the years, as they started sharing their stories, their struggles, and their goals, they realized just how beneficial sharing information and resources was. For Heather, having such a unique, accessible community just a phone call away has been critical to the work she's been able to accomplish in Sisseton. "It's not just the funding, it's the support" that makes CRCAIH so effective, Heather said, and the impending loss of that partnership is scary. "I look up to the ladies I'm sitting by," she said, and you could tell she really meant it.

Anita concluded the session with an impassioned speech about continuing CRCAIH through a mentoring program, despite the end of funding in the next year. "None of this has been easy," she said, but it has clearly been worth it. Sitting in the audience, listening to the five intelligent, passionate women speak at the front of the room about their tribes, their families, and their commitments, left me feeling confident that, while CRCAIH might change in the coming year, it certainly won't vanish.

By: Anna Simonson, PhD | Kenyon Lab | Post-doctoral Fellow | Sanford Research

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Project Updates: DenYelle Kenyon and Arielle Deutsch

April 17, 2018

DenYelle and Arielle

Center for Health Outcomes and Population Research CoBRE Grant Update from Project Leads

Dr.Kenyon and Dr. Deutsch are giving brief overviews of their CoBRE projects.

Dr. DenYelle Kenyon, PhD

DenYelle's project is focused on American Indian educational disparity. She had great graphs that really showcase the graduation rates for American Indian, White and the U.S. total. The graphs also highlight the need to understand why these education disparities exist. She is specifically looking at social networks during the transition to college. She focused on education deserts and what that really means is being more than 25 miles from a public college and w/o high-speed internet connection to access online classes. There is 11.8% of AI/AN adults living in complete education deserts. Why is this a problem? It makes it that much harder not having a college close to where they are living. Project goal is to provide more support and resources. Currently they are doing interviews with college staff and faculty. They are also interviewing freshman student's w/follow-up every 6 months. The students are both Native and non-native. The Kenyon team will also be doing social network analysis. This is important because then we can better understand the relationships and support that the student has during their time in college. Next step is finishing 1^st cohort data collection and began social network analyses. They will look at differences between Native and non-Native. Future steps would be to do qualitative data as well.

Arielle Deutsch, PhD

Arielle just recently got approval to start her CoBRE project . Arielle's new to this area and South Dakota. She highlighted the story behind her research questions. Instead of doing intervention in FASD she decided to go into intimate partner violence she felt that programming in this area was lacking. She is highlighting the relationship between alcohol misuse, risky unprotected sexual behavior, pregnancy and partner violence. She believes the above is really all cycled together. She is using a community based strategy. How do we change alcohol misuse behaviors? Protected factors that would help contraception use? She is learning how the systems within the community. System dynamic model is really the same things as a community based model. Systems based approaches, really looks at the big picture on a complex issue, how does culture, individual, access come together to influence the above associations. She did a great job of explaining really what systems based approach means. It prioritizes community/indigenous knowledge, requires transfer of models to community, and developed by the community, she stressed the importance of having community by in. More work needs to be done to understand the community. She is developing ties with Native community in both Rapid City and Indian Country. Continuing to be present at community meetings and conversations. She will be doing qualitative coding of CHOICES data for themes related to protective sources of support and risk factors. She will also be doing a health longitudinal relations between IPV,alcohol and sexual risk. She will focus more on developing the relationships with the communities and building the trust and relationship.

By: Char Green-Maximo | Ft.Peck Assiniboine and Sioux Tribes (Montana) | Sanford Research - Research Assistant

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Obesity Prevention Partnerships with AI Communities

April 17, 2018

Dr. Adams

Dr. Alexandra Adams had to Skype in due to some travel restrictions, so thank goodness for technology; otherwise, they probably would have made me speak and I would've just showed pictures of my cats. Dr. Adams began her career working with tribal communities in Wisconsin and now works in Montana. Much of the work Dr. Adams has done has been with healthy lifestyles in American Indian (AI) communities. In Wisconsin, she and her team developed and implemented an obesity prevention toolkit, with the goal of increasing physical activity and decreasing screen time. Interestingly, Dr. Adams utilized child-adult pairs when looking at their weights and healthy lifestyle. They did this intervention via mailed method and in-person mentoring but saw no difference between the two methods. From this work, they saw increased family time and physical activity.

She then expanded this work to include national populations, mailed-only interventions, and social media aspects. From their initial work, they saw some issues with children sleep and safety, which they incorporated into the next phase of the study, with the goal of improving sleep and decreasing stress. They recruited in ways that many of us are familiar with: booths at community events and Facebook. They utilized Facebook for recipe-sharing and group discussions but they noticed there was a lot of "lurkers" with not much activity. Isn't that what we all do on Facebook, though? I'm an expert "lurker/creeper."

Food insecurity was something that was reported a lot in her studies. Stress related to this food insecurity was also high, especially for urban populations. We hear a lot about "food deserts" when it comes to AI communities and that was illustrated in some of her projects. One of the things I liked the most about the projects she spoke about, was how she really looked at the family and intervening at the family level. Dr. Adams is doing some great, interesting work with AI communities and I am so glad she was able to Skype in and share her work. It was hard to encompass all of her work because she has done so much!

By: Michaela Seiber, MPH

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Storytellers of Health

April 17, 2018

Abigail

The day we have all been waiting for has finally come! The 2018 Population Health Research Summit kicked off a little later than expected. Our first speaker was the poignant Abigail Echo-Hawk. Abigail is the director of the Urban Indian Health Institute and my new best friend (I hope she likes the best friend necklace I got her). Her talk was a beautiful story filled with rich narratives of how she got to where she is today. She began with an introduction and background of her family, sprinkling pictures of herself and her family throughout the presentation. She spoke warmly of the land she was on and has been on. Abigail grew up in Alaska and attended college at the University of Washington, and I related very much with her story about finally getting health insurance and no longer needing to depend on I.H.S. because I had a major culture shock when I moved away from my home and could no longer utilize I.H.S. but had to use the clinic in my college town. I felt lost and had no idea you had to pay for medicine!

When Abigail began her research journey, she conducted focus groups with elders. In doing these focus groups, she followed all the procedures of the focus group but found it was hard to bridge the gap between what the elders knew and showing it in numbers and I think many Native researchers struggle with this when they conduct research. Next, she gave some insight on scientific rigor and cultural rigor. Cultural rigor may be new to some of you; I know I had never heard much about it until recently. In short, cultural rigor is our way of incorporating local cultural protocol into our work. Scientific and cultural rigor do not have to contradict each other, though, even though it may seem that way.

Sometimes when things are easy (i.e. research), it may cause damage to the things surrounding it. This occasionally happens when research is done in Indian Country; researchers will take the easy way around their projects, putting their subjects at risk. As soon, as I typed that last sentence, Abigail said that actually calls research participants "storytellers of health" rather than human subjects. I like that. People who take part in our research are storytellers of health and everything they share with researchers, tells a beautiful story about themselves, their communities, and their land.

She left us with some questions that I think we all need to consider. What if we all did research because we loved our people? That is something many Native researchers struggle with; traditional, Western science tells us to not look at our research participants as people but as data and, as Natives, it's hard to do that. I love my people and that's why I do research. I think that everything Abigail says speaks to my heart. She talked to us a little about generosity. When we do research, what are we giving back? Researchers should think about this concept; if you are a researcher, are you doing it to get something or are you actively working to give back to the community that you are working with?

By: Michaela Seiber, MPH

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