Webinar: Data Sharing in Research with American Indians and Alaska Natives: Informed Practices, Considerations, and Case Studies

Thursday, October 26, 2017 | 1:00-2:30 PM Eastern Time

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Overview

The use of secondary data in research leverages the resources invested in existing datasets to advance scientific discovery and improve health outcomes through novel analyses. It also raises new and important ethical considerations for protecting the rights and interests of individuals and communities whose data are included. American Indian and Alaska Native (AI/AN) tribes that participate in research are often interested in sharing their data when doing so will help answer important questions or contribute to improved child development or population health outcomes, and when appropriate protections are in place. It is critical that researchers rely on informed practices when developing data sharing arrangements with tribes, and that IRBs and funding agencies are aware of these practices and the unique considerations that must be given to this type of research.

The speaker panel for this webinar will comprise investigators and representatives from the Strong Heart Study, the AI/AN Head Start Family and Child Experiences Survey (AI/AN FACES), and the Safe Passage Study. Speakers will discuss their experience operationalizing data sharing agreements with their community partners and study participants. The discussion will highlight the risks and benefits of data sharing and present examples of informed practices for approaching such arrangements. The following topics will be discussed:

  • Conducting conversations about data sharing early in the research process
  • Informed consent and consent for secondary use of data and biospecimens
  • Ownership and de-identification of data
  • Restricted use data sets and criteria for gaining access
  • Data access committees
  • Considerations for children's data
  • Considerations for multisite research
  • Sharing research results with tribal stakeholders
  • Collaborating with tribal research review and regulatory systems
  • Building capacity for future research

What will I learn?

By attending this webinar, attendees will learn the following as it pertains to research with AI/AN individuals and communities:

  • The fundamental risks and benefits of data sharing and its implications
  • Strategies for operationalizing data sharing arrangements through examples of informed practices and viewing sample agreements
  • Specific considerations for genetic data sharing and sharing of children's data

Who should attend?

This webinar will benefit IRB professionals, IRB members, tribal research oversight entities, funding agencies, and researchers who conduct research with AI/AN individuals and communities.

Continuing Education

CIP Credit labelWebinar participants holding the Certified IRB Professional (CIP®) credential may apply 1.5 continuing education credits towards CIP recertification. Learn More »

Collaborator

NCAI logoPRIM&R is delighted to collaborate with the National Congress of American Indians (NCAI) Policy Research Center to present this webinar. The NCAI Policy Research Center was established by NCAI in 2003, and its mission is to provide tribal leaders with the best available knowledge to make strategically proactive policy decisions in a framework of Native wisdom that positively impact the future of Native peoples. The NCAI, established in 1944, is the oldest, largest and most representative American Indian and Alaska Native organization serving the broad interests of tribal governments and communities.

Speakers

Angal JyotiJyoti Angal, MPH, CIP is an Assistant Research Scientist and Director of Community Based Research within the Population Health Group at Sanford Research. As Director of Community Based Research, Ms. Angal provides oversight for research activities conducted at various Sanford Research clinical sites in South Dakota. Additionally, Ms. Angal directs the Regulatory Knowledge Core for the Collaborative Research Center for American Indian Health funded by NIHMD since 2012. The mission of the Regulatory Knowledge Core is to work with tribes in South Dakota, North Dakota and Minnesota to build tribal research infrastructure, develop policies around tribally led research oversight, including tribal IRBs and issues related to data ownership and sharing. Ms. Angal also serves as a Co-I for the Infant Safe Sleep Study, a mixed-methods research project funded by NICHD in 2014. The primary aim of this project is to develop a culturally appropriate infant safe sleep curriculum to reduce the risk of unsafe infant sleep practices in American Indian Communities in the Northern Plains.

Deanna Around HimDeana Around Him, DrPH, ScM (Cherokee Nation) is the Research Manager at the NCAI Policy Research Center. She holds a Bachelor of Arts in Community Health from Brown University, a Master of Science with a concentration in Maternal and Child Health from the Harvard School of Public Health, and a Doctor of Public Health from the Johns Hopkins Bloomberg School of Public Health. She also completed a post-doctoral fellowship at the National Institutes of Health Clinical Center and previously served as the Collaborative Research Center for American Indian Health (CRCAIH) Fellow at the NCAI PRC. In addition to American Indian maternal and child health, Dr. Around Him is interested in the translation of research to practice, culturally responsive assessment and evaluation, and building public health practice and research capacity in Indian Country.

Amy ElliottAmy Elliott, PhD is a Senior Scientist and Founding Senior Director of the Center for Health Outcomes and Population Research (CHOPR) at Sanford Research and Professor and Co-Division Chief for Pediatric Research at the University of South Dakota Sanford School of Medicine. Dr. Elliott received her bachelor’s degree in psychology from the University of Minnesota – Moorhead and a master’s degree in Clinical Psychology from North Dakota State University. She received her doctorate degree in Clinical Psychology from Western Michigan University and completed an internship and fellowship in Behavioral Pediatrics and Genetics at the Munroe-Meyer Institute, University of Nebraska Medical Center. Dr. Elliott is the principal investigator for numerous large longitudinal research studies, including the Safe Passage Study (NICHD U01HD045935) and Environmental Influences on Child Health Outcomes (ECHO, NIH UG30D023279). Dr. Elliott is also the Principal Investigator for the NIMHD Transdisciplinary Research Center entitled the ‘Collaborative Research Center for American Indian Health’ that brings together tribal communities and health researchers within South Dakota, North Dakota and Minnesota (NIMHD, U54MD008164). Dr. Elliott’s research in the effects of prenatal exposures on fetal, infant and child health occurs through collaborations with investigators and communities across the United States, as well as in South Africa.

Lizabeth MaloneLizabeth Malone, PhD is a senior survey researcher at Mathematica Policy Research in Washington DC. Over the last 15 years, she has contributed to the design, implementation, and analysis of several national studies on children’s development and early care and education settings, including the Head Start Family and Child Experiences Survey (FACES) and the Early Childhood Longitudinal Studies (ECLS). She is the current project director of FACES and the American Indian and Alaska Native Head Start Family and Child Experiences Survey (AI/AN FACES), the first national study of Region XI Head Start children, families, and programs, which are operated by federally recognized tribes. She holds a PhD in developmental psychology from Teachers College, Columbia University, and her research interests include early childhood development, measurement development, and early education and care.

Marcia OLearyMarcia O’Leary, RN is manager of Missouri Breaks Research Industries, Inc. (MBIRI). She and her husband Tim (Cheyenne River Sioux Tribe) developed MBIRI to build capacity for health research within tribal communities. MBIRI works to improve health outcomes to impact present and future generations by bringing investigators together with tribal leaders and community members. Today, MBIRI employs more than two dozen staff, has assisted with the career development of numerous native researchers, and works with investigators from across the nation on research projects that are of specific interest to the health and wellbeing of tribal communities. The goal of MBIRI is to collaborate with researchers to maximize the efficacy of research in American Indian communities for the benefit of community members.

Additional Resources

A collection of relevant background reading, further reading, links, templates, checklists, and/or charts accompany each PRIM&R webinar. Groups that register for webinars receive a discussion guide containing thought-provoking questions and facilitation tips that may help in using the webinar as an educational tool for IRBs.

Background Reading:

Arias, J.A., Pham-Kanter, G., Gonzales, R., Campbell, E.G. (2016). Trust, vulnerable populations, and genetic data sharing. Journal of Law and the Biosciences, 2, pp. 747-753. doi:0.1093/jlb/lsv044

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