Why is it important for tribal nations to think about managing research data?

What can be done with data that comes from research projects occurring within tribal nations?

Version 2 of the CRCAIH Research Data Management Toolkit aims to answer these questions and provide a framework for tribal nations to manage the research data that comes from their community. In 2016, CRCAIH released the Data Management Toolkit, which provided a lot of great technical insight to data management in the research realm; however, we found that it did not completely meet the needs of our Tribal Partners. After many discussions, we decided to update the toolkit and add more tribal perspective and context to make this a tool that any tribal nation could pick up and use to get the conversation and process started.

This is not an easy undertaking; in fact, it has been a much-nuanced endeavor, becoming more complicated with each layer that is peeled back. No two tribal nations are alike and that is apparent when our Tribal Partners talk about their data experiences, and with each discussion, I realized what a unique situation we found ourselves in when we decided to update this toolkit. Research data management will not look the same in every tribal nation, but we hope that every tribe that references the updated toolkit will be able to find helpful pieces that allow them to build and strengthen their data management framework.

Within CRCAIH, many of our conversations regarding managing research data were going in circles, oftentimes with no resolutions being found, which is what led us to updating this toolkit. There needs to be options for tribal nations involved in research, or who want to be involved in research, to play a bigger role in deciding what is done with the data produced about them. We have all been working hard to get the changes made in a sensible, culturally relevant way, and I am personally pleased with the outcome so far.

Once this toolkit is complete, tribes can reference it to find:

• Template for Research Data Management Policies and Procedures
• Questions to ask concerning data when reviewing research projects
• Example Data-Use Agreement
• Suggestions on obtaining data from researchers
• How to store the data
• How the tribal nation can use that data
• Sample dissemination plan
• Secondary research projects
• How to handle unique situations that may occur with tribal nation data
• Lifecycles of data
• Definitions regarding data

This has been a fun (and exhausting) project and the product is going to be AMAZING. Keep your eyes peeled for more updates on this toolkit and its release date.

By: Michaela Seiber, MPH | Sisseton-Wahpeton Oyate | CRCAIH Regulatory Knowledge Core

Do you ever just get writerΓÇÖs block so badly that you canΓÇÖt write a blog post for a while? IΓÇÖve had so many people asking when IΓÇÖd get another blog post up (just kidding, the only one asking has been my boss). I think inspiration is finally coming back! The CRCAIH team is busy planning the 2019 Summit, which will be held in Sioux Falls, SD. We have a great line-up of speakers, food, and entertainment, so keep an eye on the Summit page for more details.

For this blog post, I want to talk about a fun little B-vitamin: folic acid. We missed Folic Acid Awareness Week by a few days, but itΓÇÖs always a good time to talk about the importance of folic acid. Anyone who could become pregnant should aim to get 400 mcg of folic acid every day. Folic acid is key in preventing birth defects that affect the brain and spine. These birth defects will form within the first few weeks of pregnancy, thus having an adequate supply of folic acid prior to becoming pregnant is ideal.

Folic acid can play an important role in preventing defects such as spina bifida or cleft palate. ItΓÇÖs also good for your hair, nails, and skin. I hope that itΓÇÖs becoming obvious how awesome folic acid is and now you might be wondering how you can get more folic acid to reap the many benefits. Folic acid, like other vitamins, can be taken in pill form (no prescription needed) or you find it in a plethora of foods. The CDC has some great suggestions on what foods you can incorporate into your diet to get more folic acid. Some of those foods include:

• Broccoli
• Spinach
• Citrus (oranges, lemons, grapefruit, etc.)
• Beans
• Lentils
• Fortified breakfast cereals

One of the projects that came from CRCAIHΓÇÖs Pilot Grants Program actually gathered some information on vitamin-use during pregnancy. Recently, those involved with the project worked to disseminate the results through infographics, pairing them with health education on folic acid. This project was done by our good friends up in Sisseton, with the help of some staff at South Dakota State University. Team members worked hard to get the right information across and provide some concrete, understandable take-home messages for community members viewing the infographics. One of their goals was to educate community members on where to find folic acid, resulting in a beautiful infographic illustrating just that (below).

Alright, thatΓÇÖs that. Our blog is up and running again! Next time, IΓÇÖm going to fill you in on some of our efforts regarding tribal research data, its management, and updates to our toolkits.

By: Michaela Seiber, MPH | Sisseton-Wahpeton Oyate | CRCAIH Regulatory Knowledge Core

On a Sunday in July, I received a heartbreaking call from a friend. She was calling to tell me that one of our friends had died by suicide. She was young, inspiring, and still had things to accomplish in this world. She was also very open about her mental health, and our friend group surrounded her with love and support, trying to push the scary things away and help her keep living. In the end, the scary things won, and we are still picking up the pieces.

September is Suicide Prevention Awareness Month, and I know my friendΓÇÖs story is not unique. Every year, more than 40,000 Americans die by suicide. Some of you reading this may have your own stories to share about how suicide has affected you; IΓÇÖm sorry you have to carry that weight with you.

Also in July of this year, the Argus Leader published a story on suicide in South Dakota, including the fact that in 2017, South Dakota saw its highest rates of suicide deaths. One of the protective factors for suicide (something that is likely to stop someone from suicide) is effective behavioral health care. That makes sense, right? If someone is receiving effective care for their mental health needs, they are less likely to die by suicide. The problem with this, though, is that mental health care around the U.S. is inadequate. We have more people who need help than providers who can see them, and the system itself can be incredibly hard to navigate.

If you tried right now to get an appointment for the first time with a counselor or psychiatrist in Sioux Falls, many places would require a referral from your primary care provider. This means you would need to, first, be able to afford to see a primary care provider. This also means you would need to have transportation to make it to multiple appointments, then possibly to the pharmacist, and you would need to have a place to call home, where you can store your medicine. You need a clock so you know when to take your medicine or when to leave so you can make it to your next appointment. These things arenΓÇÖt feasible for everyone.

There are so many moving pieces to effective mental health care. One suicide risk factor that we encounter in our work at CRCAIH is historical trauma in our Native populations. Historical trauma is trauma that our ancestors faced (i.e., boarding school placement, assimilation, and the loss of culture and language) and carrying this trauma around increases our risk for suicide. Things we have no control over are contributing to the high rates of suicide throughout Indian Country.

What can we do? NAMI has some great resources available to understand the warning signs and risk of suicide and to prevent suicide. There are calling and texting hotlines available. There are some programs in South Dakota are making herculean efforts to combat suicide; one I learned about recently is called BeThe1SD, and theyΓÇÖve put out some powerful videos and resources that are relevant to communities around the state. It's going to take a lot to change the current crisis we are seeing, but we can begin by shifting the narrative around mental health and suicide. It's okay to be sad, and it's okay to need help.

Check on your friends and family. Tell them you care.

If you need to talk, you can call the National Suicide Prevention Lifeline 1-800-273-8255 or text NAMI to 741-741.

By: Michaela Seiber, MPH | Sisseton-Wahpeton Oyate | CRCAIH RKC

Hi, IΓÇÖm Margeaux. I recently finished up my internship at Sanford Research in Sioux Falls as part of the Summer Undergraduate Research Experience (SURE). Over the summer, I had the opportunity to work in the Kenyon Lab on the College Social Support Study, a research project that examines factors in Native American (NA) College studentsΓÇÖ experiences and how these factors subsequently affect retention and persistence rates. Overall, this study hopes to promote change by identifying these factors and positively influencing university policy that affects Native students.

Because of the research I was involved in this summer, I had the chance to work directly with Native communities on several occasions. As a non-Native woman who has only recently begun to work with NA communities, IΓÇÖve found that itΓÇÖs extremely important to understand the nuances of engaging with these communities, especially as an outsider (i.e. someone who is non-Native, not an enrolled member of a tribe, and has not lived on a reservation).

When working with NA communities, it is important to familiarize yourself with the concept of historical trauma and understand its impact on Native communities. As a non-Native researcher, it is your job to educate yourself about the populations you want to work with. This also includes educating yourself on past research wrongdoings. By doing these things, you will be in a better position to show these communities that you are there to work collaboratively with them. By learning about the adversities specific to Native communities and their reasons for hesitance towards research conducted by outsiders, you can divert from harmful past practices and maintain an equitable relationship with the community.

When I worked with a tribal community in South Dakota as part of my internship, I always kept this in mind. I listened, watched, and learned from those who were part of the community. While recognizing the adversities that the community faced, I also had a wonderful time learning about Native culture and education. As a non-Native researcher, I think it is important to recognize that a research project shouldnΓÇÖt be one-sided and communities have valuable information to teach those working with them. Be grateful that those in the community are giving you their time and input.

Before I started this internship, I wasnΓÇÖt aware of the strong push being made by Native researchers to focus on strength-based results as opposed to deficit-based results. I learned that itΓÇÖs much more effective to look at the positives. Something else I try to keep in mind: When looking at the negatives, itΓÇÖs my responsibility as a researcher to work with my partners to see how these results can help initiate positive change in the future. Always work towards creating and maintaining an equitable environment for the research to occur within.

Because I am lucky enough to be able to pursue higher education, I want to use this opportunity to continue to work alongside Native communities. Near the beginning of this year, when I first began working with Native communities, I met some young students at a tribal school who were already dealing with adverse situations at home; similar situations that I had dealt with as a child as well. This is the primary reason why I want to work to be an agent of change within these communities.

This internship has offered me so many invaluable experiences, as well as igniting a passion for collaborative, applied research. I hope by sharing some of the experiences I had, non-Native readers looking to do work with Native populations can reflect on their own mindset when working with Native communities in the future.

By: Margeaux Gaiani | South Dakota State University | SURE Intern | Kenyon Lab