AGENDA. Overview of three-pillars. Holding Space toolkit Research Futures Game Experience game Debrief Discussion guide Governance Trust Culture

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HOLDING SPACE: A TOOLKIT FOR TRIBAL -ACADEMIC PARTNERSHIPS Julie E. Lucero, PhD, MPH Amber Emerson, MPH University of Nevada, Reno Yvette Roubideaux, MD, MPH NCAI Policy Research Center June 3, 2018

AGENDA 1 2 Overview of three-pillars Holding Space toolkit Research Futures Game Experience game Debrief Discussion guide Governance Trust Culture

FOUNDATIONS OF TRIBAL-ACADEMIC RELATIONSHIPS Holding Space: A Guide for Partners in Tribal Research. National Congress of American Indians & University of Nevada-Reno, forthcoming.

TRIBAL-ACADEMIC PARTNERSHIP: A VIGNETTE

GOVERNANCE: REGULATION VS. STEWARDSHIP IRB (HARM TO HUMANS) TRIBAL OVERSITE (RESEARCHER BURDEN) BALANCE NEEDED Holding Space: A Guide for Partners in Tribal Research. National Congress of American Indians & University of Nevada-Reno, forthcoming.

Trust Conceptualization Respect and safety is providing particular attention to an individuals thoughts and opinions while ensuring a culturally and emotionally safe environment to voice thoughts and opinions. Cultural safety means no assault on a person s identity. Sense of responsibility is demonstrated as being able to complete tasks, dependable, reliable, and accountable. All of which move the partnership forward. Shared values and goals creates camaraderie and solidarity; confidently knowing that each partnership member will strive to achieve the same goals. Lucero, J.E.. (2013). Trust as an ethical construct in community based participatory research partnerships. (Published doctoral dissertation), University of New Mexico, Albuquerque, NM

CULTURE A s h u m a n s, w e a r e c u l t u r e - b e a r i n g, c u l t u r e - m a k i n g, a n d c u l t u r e - s h a r i n g b e i n g s. Source: Cultures and Selves: A Cycle of Mutual Constitution. Perspectives on Psychological Science 5, Markus & Kitayama, 2010

HOLDING SPACE: R ESEARCH FUTURES GAME FOR T R I BAL-AC A D E M I C PA RTNERS H I P S

Future Game Workshop x\ Data Inspired; Culturally Driven

Steps in playing the game Forward from Year 1 to Year 20 Identify roles Five game steps (Year 1,2,5,10,20) at each step: Table Sheet and Decision Sheet 10 minutes to discuss and debate Make decision at 1-minute warning Choose 1 of the 2 options Record on decision sheet Hand in decision sheet receive next one..

ROLES Postdoctoral Researcher Young Tribal Leader Senior Researcher Elder Tribal Leader Tribal Grant Administrator

Your Future Begins. x\ Data Inspired; Culturally Driven

Partnerships Plausible Scenario Matrix The capacity has been created to build and sustain high quality collaborative partnerships. These span dimensions of geography, sector and expertise. Scenario A Scenario B Health policy is defensive in posture, with concern about lose of individual and tribal rights and identity. Policy is locally determined, and referenced against immediate local concerns such as individual safety and health. Scenario D Health Policy Scenario C Health policy is open and progressive, with an eye for futuristic cutting edge best practice solutions. The focus is on optimal and ambitious population and community health outcomes. Tribal Research Environment 2030 Partnerships are difficult to create and sustain. Trust is eroded, and most groups / tribes and institutions operate on a self interest and risk adverse basis.

Tribal-Academic Partnerships Plausible Scenario Matrix Research partnerships are built on mutual trust, respect, and are oriented towards community benefit. Tribal culture is valued as an integral part of research and there is a reciprocal exchange of knowledge/expertise among partners. Governance of the research is collaborative, but deferential to the sovereign authority of the tribe. Resources are shared and there is commitment to build community capacity over time Fast Forward Respecting and Connecting The tribal community is suspicious of health research and assumes a defensive posture against its use and practice. If health research is conducted, it is initiated by external agendas. Local policies, if present, are referenced against immediate community concerns and tend to be reactive. Health Research and Policy Health research is driven by the desire to deliver optimal and ambitious population and community health outcomes. Local policies are anticipatory and progressive, defining and applying culturally-rooted best practices to ensure community benefit. Protective Perspective Lost in Translation Tribal Research Environment 2030 Combined from focus group sessions Research partnerships are difficult to create or maintain. Tribal nations and academic institutions operate on a risk adverse basis and display gatekeeping behaviors owing to a lack of trust. Tribal culture is not integrated into any aspect of the research process.

Future Game Workshop x\ Data Inspired; Culturally Driven

HOLDING SPACE: DISCUSSION GUIDE FOR TRIBAL-ACADEMIC PARTNERSHIPS

PROJECT HISTORY PA R T N E R S : Q U A L I TAT I V E S T R AT E G Y: 5 c a s e s t u d i e s 1 A substance abuse prevention partnership with Northwestern tribes Y E A R S : 2009 2013 Q U A N T I TAT I V E S T R AT E G Y: Recruited 318 partnerships for national online survey 2 3 4 A colorectal cancer screening project in Chinatown, San Francisco A rural African-American economic development and cardiovascular disease project A NARCH Lakota cancer control project 60% response rate 450 individuals 5 A Latino environmental justice policy partnership F u n d e d b y N A R C H V, U 2 6 I H S 3 0 0 2 9 3

A THEMATIC ANALYSIS Partnership Outcomes Synergy Personal Outcomes Agency Outcomes Power relations Sustainability Community change Community health Overall outcome Governance X X X X - X - X Trust X - X X X - - X Culture X - - X X - - - Governance: Resource sharing and written agreements. Trust: Partnership principles, participation, and trust at partnership start. Culture: Community principles and partner values Funded by NARCH V, U26IHS300293 Duran, B., Oetzel, J., Pearson, C., Magarati, M., Zhou, C., Villegas, M., Muhammad, M., Belone, L.,& Wallerstein, N.,(submitted) Promising Practices and Outcomes: Learnings from a CBPR cross-site national study. Progress in Community Health Partnerships

NARCH VII: DISSEMINATION & IMPLEMENTATION To disseminate within and support American Indian/Alaska Native communities in CBPR partnerships to: Implement best practices learned from previous research Governance, Culture and Trust are crosscutting themes that matter to research partnerships Inform and improve the quality of Al/AN health disparities research Promote genuine community-academic partnerships

DISCUSSION GUIDE: MODULE CONTENT GOVERNANCE TRUST CULTURE Resource sharing Capacity building & enhancing Ethical stewardship Transparency Open communication Power balances Conflict negotiation Alignment of values Relevance of research topic Roles of Engagement Cultural safety, humility

GOVERNANCE The WHEN of Governance Does governance take place only during the moment when the tribal council (or other vested entity) decides to approve or not approve research proposal? Does governance take place when the parameters of research design and outreach to research participants are being negotiated? Does governance take place only during times of conflict? Does governance take place over the course of the research project?

GOVERNANCE AS STEWARDSHIP Ethical governance in research is more than regulation, it is responsible stewardship that manages risks and ensures benefits for individuals and the community as a whole. Tribal nations, as sovereigns, duly exercise oversight for the welfare of their citizens. WHAT AND WHO IS AT RISK? WHO IS RESPONSIBLE? WHO BENEFITS? WHO DECIDES? Holding Space: A Guide for Partners in Tribal Research. National Congress of American Indians & University of Nevada-Reno, forthcoming.

TRUST IN TRIBAL RESEARCH [M]any Native people are wary of research and do not trust researchers, the academic institutions they represent, and/or the funding agencies. This is largely due to the fact that the term research can remind Native people of the legacy left by researchers who did not prioritize the benefits of Native peoples and who, in some cases, caused harm by exploring inappropriate questions, misusing data and biological specimens, and using data gathered from community members to address issues that have little or no relevance to the community. Walk Softly, Listen Carefully, p.14, emphasis added Walk Softly, Listen Carefully: Building Research Relationships with Tribal Communities. National Congress of American Indians and Montana State University, 2012.

TRUST CONSTRUCTION NO NO TRUST UNEARNED TRUST NEUTRAL TRUST FUNCTIONAL TRUST PROXY TRUST CRITICAL REFLECTIVE TRUST YES MISTRUST/ SUSPICION Lucero, J.E.. (2013). Trust as an ethical construct in community based participatory research partnerships. (Published doctoral dissertation), University of New Mexico, Albuquerque, NM

Concern for Others (Cooperativeness) KNOWING YOUR CONFLICT STYLE HIGH Accommodating (Friendly Helper) Collaborating (Problem Solver) Compromising (Maneuvering Conciliator) LOW Avoiding (Impersonal Complier) LOW Concern for Self (Assertiveness) Competitive (Tough Battler) HIGH Source: Based on Managing Conflict on the Farm by Guy Hutt and Robert Milligan.

CULTURAL HUMILITY IN RESEARCH Principles of Cultural Humility 1 Lifelong learning & critical selfreflection Partner Relations What do you know about your research partner? What are the benefits of partnering? 2 3 Recognizing & challenging power imbalances Institutional accountability & respect What are the costs (or risks) of partnering? What does it mean to be culturally safe in the context of a research project? 4, 5 Chávez, V. (2013). Cultural Humility: People, Principles, and Practices. YouTube: https://www.youtube.com/watch?v=_mbu8bvkb_u.

IDEAL PATH OF RESEARCH PARTNERSHIPS Toolkit Training Stronger Tribal Academic Partnerships Better decision-making Better research is conducted Disparities decrease Guide Game Target audience: tribal academic research partnerships Understand governance, trust, culture concepts critical to partnership Implement concepts in partnership Tribe as steward, sovereignty Trust, less conflict Culture protected, respected, research better fit Synergy Power dynamics change Community benefits from research Partnership benefits and is sustained Capacity building for partners Tribal involvement throughout process Better science Community transformation Community health improvement Holding Space: A Guide for Partners in Tribal Research. National Congress of American Indians & University of Nevada-Reno, forthcoming.

CONTACT INFORMATION Julie E. Lucero, PhD, MPH Assistant Professor, School of Community Health Sciences University of Nevada, Reno julielucero@unr.edu (775) 682-7115 Amber D. Emerson, MPH Project Coordinator, School of Community Health Sciences University of Nevada, Reno aemerson@nevada.unr.edu (775) 682-7115 Yvette Roubideaux. M.D. MPH Director, Policy Research Center National Congress of American Indians yroubideaux@ncai.org (202) 466-7767 ext. 228