Community-based Participatory Research: A Perspective from Indian Country

1. Community-based Participatory Research: A Perspective from Indian Country Corey B. Smith, PhD Great Plains Tribal Chairmen’s Health Board Rapid City, South Dakota November 15, 2012

2. Who We Are Great Plains Tribal Chairmen’s Health Board Mission To improve the health of the 18 Northern Plains Tribal nations and communities in the four-state region of Iowa, Nebraska, North Dakota, and South Dakota through Tribal partnerships and public health practices while respecting Tribal sovereignty and traditional values.

3. Aberdeen Area Map • 4 states • 17 tribes and one service area • IHS health facilities: • 8 hospitals • 13 health centers • 13 health stations • 2 community clinics • IHS serves approximately 119,000 Indians on reservations

4. Race in the Northern Plains Source: US Census Bureau, 2006-2008, American Community Survey

5. Age (years): AI/AN versus Whites Source: US Census Bureau, 2006-2008, American Community Survey

6. Unemployment Rate* *Rates are based on the civilian, non-institutional population 16 years of age and older who are actively seeking employment and able to work. Retrieved from: http://www.bls.gov/cps/cps_htgm.htm. Source: US Census Bureau, 2006-2008 American Community Survey

7. Life Expectancy (in years) Source: Indian Health Service. Regional Differences in Indian Health 2002-2003

8. Preventable Deaths in the Northern Plains Source: Indian Health Service. Regional Differences in Indian Health 2002-2003

9. What is CBPR? “... is a collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings. CBPR begins with a research topic of importance to the community and has the aim of combining knowledge with actionand achieving social change to improve health outcomes and eliminate health disparities.” Source: Kellogg Health Scholars Program. [cited 2012 November 13]. Retrieved from: http://www.kellogghealthscholars.org/about/community.cfm

10. Why CBPR? • Biomedical knowledge by itself cannot explain nor address health disparities that exist in underserved or disadvantaged populations • Distrust of researchers and academic research institutions • Deceptive research practices • Cultural insensitivity • Racism • Historical trauma • Low acceptance of public health interventions by communities

11. CBPR Principles • Recognizes community as unit of identity • Builds on strengths and resources • Facilitates partnership in all phases of research • Promotes shared learning that attends to social inequalities • Addresses health from both positive and ecological perspectives • Disseminates findings and knowledge to all partners • Involves long-term commitment by all partners Source: Adapted from : Israel, BA, Schulz, AJ, Parker, EA, Becker, AB, Allen, AJ, and Guzman, JR. “Critical Issues in developing and following CBPR principles,” Community-Based Participatory Research in Health,Minkler and Wallerstein (eds), Jossey Bass, 2000.

12. What do we mean by “community?” • Community by geography (epidemiological): A population consists of persons defined by location and other attribute(s) (for example, race, ethnicity, gender, sexual orientation, or health status) • Community of Identity (sociological): Group of persons with common identity having shared interests, values, norms and commitments (for example, profession, social class, political ties, institutional allegiance, cultural and religious beliefs) Source: Israel et al. Critical Issues in developing and following CBPR principles,” Community-Based Participatory Research in Health, Minkler and Wallerstein (eds), Jossey Bass, 2008.

13. Community Engagement • Identify potential community partner. • Assess interest and readiness for research (for example, environmental stability) • Understand formal interaction with community • How does tribal government work? Election cycle? • Who is Health Director and Chairman? How do they view research? • How many on Tribal Council? When does Health Committee meet? • When does Council meet? Who can tell me how to request a tribal resolution? • What are the expectations for tribal approval process ? • Are there any community members who have time to serve as project champion? • Identify opportunities for less formal communication with community (for example, media, participation in tribally-sponsored events, and others)

14. Community Engagement (continued) • Agree upon governance structure for project. • How much control: Advisory Board vs. Steering Committee? • Communications, meetings and decision making • Need for subcommittees (for example, Data Use and Publications)? • Address these questions early: • How will tribal members benefit? • Who will own the data? • What is the budget? • Become mindful of ethical considerations

15. Levels of Research Protection Source: McCarthy & Porter, 1991

16. Continuum of Tribal Participation in Health Research Source: Adapted from American Indian Law Center, Inc.,1999

17. How does community participate in research? • Identify research question or priority. • Should closely align with expressed concerns of tribal community— could be generated by Tribe or outside organization • May also represent next step in working together • Develop and refine study methodology. • Solicit input from Advisory Board/Steering Committee on cultural appropriateness of all research activities • Review of draft protocol by Advisory Board/Steering Committee • Obtain approvals of study protocol by tribe, university, and IHS

18. How does community participate in research (2)? • Data collection • Hire and train community members • Interviewers • Focus group facilitators • Interventionists • Data are collected by community members • Invite community representatives to review results • Data analysis • Preliminary results reviewed by team and Community Advisory Board • Members of community outreach team assist with interpretation with attention to larger cultural and social context

19. How does community participate in research (3)? • Dissemination • Draft report reviewed by Advisory Board/Steering Committee • Present results to group(s) of interested study participants • Formally present results to Tribal Health Directors and Tribal Councils • Collaborate with CAB on finalizing recommendations

20. CBPR Example: Improving Sexual and Reproductive Health in Northern Plains Tribal Communities • Scope of the Problem • HIV/AIDS is a serious public health concern for AI/AN communities • Northern Plains American Indians have higher rates of STIs, than Native counterparts elsewhere in US • Incidence rates for STIs, including HIV, are increasing steadily in the region, especially among youth • Geographic isolation, social stigma, lack of knowledge, and high rates of poverty make access to screening and testing services difficult • Tribal public health seeking evidence-based interventions that are culturally appropriate, ecologically feasible, and effectively reduce community risks associated with HIV/AIDS • Partnership between GPTCHB and South Dakota Tribe • and evaluate the feasibility and effectiveness of an evidence-based intervention for the prevention of HIV and other STIs among adolescent youth.

21. CBPR Example: Partnerships and Recommendations • 2005 – 2007: Identification of collaborative opportunities with South Dakota tribal communities • Regional Strategic Plan for STD/HIV Prevention adopted by tribes, GPTCHB, IHS, state health departments, and other key stakeholders • Native American Advisory Council to South Dakota HIV Planning Group recommends conducting statewide community needs assessment to: • Estimate prevalence of sexual and drug-use risk behaviors • Estimate frequency of screening and testing among AI at risk for STIs and HIV • Identify gaps in prevention services delivery

22. CBPR Example: ASHSS Study • 2008 – 2009: Community-based needs assessment of adult American Indians (AI) at risk for STDs living in South Dakota • Co-funding: IHS and South Dakota DOH • 24 member Community Advisory Council (CAC) with representatives of all 9 tribes provided input on direction of project and review of study materials • Obtained all 9 tribal and IRB approvals • Conducted 16 key informant interviews with providers; focus group interviews with community members of 7 tribes • Results discussed with CAC but funding would not support dissemination to tribal leaders

23. CBPR Example: A Cultural Adaptation of an HIV Intervention for Native American Youth • 2010 – 2011: Two Native American Research Center for Health (NARCH) projects funded Phase I: Planning and development grant to demonstrate need and select an evidence-based intervention aimed at reduction of risk behaviors associated with HIV and STIs in Native American youth Phase II: A competitive Supplement awarded in 2011 to implement and evaluate a culturally-adapted HIV preventive intervention program that is designed to reduce HIV-related risk behaviors among adolescent youth on a South Dakota reservation

24. CBPR Example: NARCH Study Accomplishments… • Received tribal resolution • Established Dedicated Community Advisory Board (CAB) with representation from 6 adult and 2 youth members • Offer expertise, guidance and direction • Held one in-person meeting and quarterly conference calls • Recruited project staff • Held training workshops • “Planning and Facilitating Focus Groups • 4-day workshop on intervention • HIV testing and counseling • Co-sponsored community events to promote awareness of project • Secured Ms. Shana Cozad as featured speaker • Official ‘go-live’ date of project • Solicited artwork from reservation community for project logo

25. Challenges • Cultural humility • Need for self-awareness-- beliefs, values, and prejudices • Acknowledge differences • Environment • Dynamic, but sometimes unstable due to high staff turnover • Often lacking in material resources and expertise • Significant geographical barriers, diverse economic conditions, and inadequate distribution of services • Academic Time vs Community Time • Heavy initial investment in time • Cultivating relationships • Training of community members • Waiting for multiple approvals (individual and community) • Different time horizons between funding agency, tribe(s) and university

26. Challenges (2) • Ethical tensions • Dual roles of community member and collaborator pose threats to confidentiality • Promise-keeping vs adherence to protocol • Balancing individual and community protections • Evaluation: Is CBPR testable?

27. Benefits • Science • Easier to recruit into current and future studies • Higher rates of participation • Richer interpretation of findings (i.e., qualitative data) • Improved validity of studies (theoretically, at least)

28. Benefits (2) • Tribal communities • May serve as basis for re-establishing tribal health priorities • Development of new interventions and strategies for improved public health • Use evidence to advocate for policy change • Obtain additional funding for needed resources and services • “Opens the door” to long-term relationship

29. Benefits (3) • Mutual benefits to science and to community • Application of knowledge to “real” (contra “ill-defined”) public health concerns • Production of shared knowledge promotes greater equity, independence, and goodwill • Shortened path from implementation to sustainability in real world

30. Parting Thoughts on CBPR • Assumptions: Maintain an attitude of reflective self-awareness • Myself • Colleagues in academe • Community partners • Values: Successful partnerships are based on foundation of trust • Transparency • Mutual respect for differences in knowledge and worldview • “Relanguaging” research: Effective communication requires translation in terms that are consistent with lived experience of community members • Negotiation skills are essential “You can’t always get what you want, but if you try some time, you’ll find you get what you need.” –Mick Jagger • Professional gratification from CBPR hard to quantify but well worth the effort!

31. Contact: • Corey B. Smith, PhD • 605-721-1922 (x161) • corey.smith@gptchb.org Acknowledgements: A special thanks is due to the community members of the Tribal nations with whom I have had the privilege of working side-by-side these past years

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