Preparing to Work With Systems and Stakeholders in SBIR

1. Preparing to Work With Systems and Stakeholders in SBIR Ann Marie White, Ed.D. Assistant Professor University of Rochester Medical Center July 2012 This picture shows how homeowners take pride in their home and street. This street is revitalized with new curbs, new sidewalks, and new paved streets. It brings beauty to homes and community. It shows that neighbors communicate with each other. It shows that this is a safe block. -Block Club

2. Objectives • Background: current research context giving rise to these perspectives • Examine frameworks for collaborative science and engagement with stakeholders and in systems • Illustrate through example CBPR study in suicide prevention Recruitment and Training of Natural Helpers: Development of Action-Research Partners to Strengthen the Ecology of Mental Health Promotion and Violence Prevention in the Urban Neighborhood NIMH-funded Pilot Project ofthe Mental Health Promotion Task Force of Rochester and Monroe County; PI=AM White [P20 MH071897]

3. Ecological model: Shared risks for interpersonal violence and suicide in the United States (modified by Caine from Krug et al, eds: World Report on Violence and Health. WHO, 2002) Poverty High crime levels High residential mobility High unemployment Local illicit drug trade Weak institutional policies Inadequate victim care services Inadequate community cohesion Psychological/personality disturbance (d/o) Alcohol/substance abuse Victim of child maltreatment or current abuse Violent behavior—past or current Suicidal behavior—past or current Access to lethal means Societal Community Relationship Individual Unstable social infrastructure Economic insecurity Discrimination: gender; race; other Policies that increase inequalities Poverty Weak economic safety nets Cultural norms that support violence Access to lethal methods (firearms) Exposure to poor parenting or violent parental conflict Fractured family structures Family history of suicide Current relationship/marital turmoil—participant in intimate violence Financial, work stress; under- or unemployed Friends & family that engage in violence

4. Translational Sciences: T1-T3 Annals of Family Medicine, 2007, 5(2), 185-86

5. Thinking in Terms of Systems “A system…refers to the particular configuration of all relevant entities, resources, and processes that together adequately characterize the problem space under study.” “A system is defined by the boundaries that stakeholders use to determine which acts/observations are relevant for their inquiry as well as the interpretations/judgments that they use to guide decisions or actions (Urlich, 2002).” - http://grants.nih.gov/grants/guide/pa-files/PAR-11-314.html

6. Domains and Variables to consider in EBPs among communities of color • Values • Cultural beliefs • Spirituality • Religion • Concepts of: • Family • Respect • Communal vs. Individualistic • Cooperation vs. Competition • Interdependence vs. Independence • Rituals • Traditions • World view • Contextual • SES • Immigration status • Generation in US • Degree of political power • Transnationalism • Geographic region • Cultural knowledge • Acculturation level • Self-identified cultural identity • Heterogeneity within culture • Respect for community knowledge • Setting • Age • Historical • Racism • Ethnocentrism • Colonialism • Displacement • Genocide • Prejudice • Discrimination • Exploitation • Methodological • Paradigm/Conceptualization • Epistemology • Empirical • Non-empirical • Qualitative • Pluralistic • Efficacy vs. Effectiveness • Definition of evidence • By whom • Using what standard • Compared to what • Research approach • Traditional (Top down) • Community defined (Bottom up) • Data collection/analysis/interpretation • Translation • Clinician/Consumer match Developing, Adapting, Choosing and Using Evidence Based Treatments/ Empirically Supported Treatments • Transactional • Language • Engagement • Synchronous goals • Relationship • Engaging youth, families, & • consumers in research • Availability of providers K. Martinez. (June 2008). Evidence Based Practices, Practice Based Evidence and Community Defined Evidence in Multicultural Mental Health. NAMI Annual Convention, Orlando, Florida.

7. Share Responsibility of Intervention Development & Dissemination by Seeking to Learn from Practitioners … Capacity to implement interventions and research Values & expertise Pro-innovation bias of scientists can ignore/undermine existing “indigenous” practices Complexity of their decision-making to adopt and implement innovation Small theory – study processes in specific local programs, and study how to insert powerful ideas into existing structures - Miller & Shinn (2005), Learning from communities: Overcoming difficulties in dissemination of prevention and promotion efforts. AJ Community Psychology, 35 (3-4), 169-183.

8. I. Needs Assessment -Mental Health Promotion Task Force Vision - Neutral community table Convened by FLHSA (under contract with UR) in partnership with University of Rochester’s Department of Psychiatry & Monroe County Office of Mental Health’s ACCESS. Designed six sessions: needs assessment and prioritization Goal- Design, test & implement collaborative MHP interventions Top issue-Normalization of violence among families with school-aged children Implementation -NIMH-funded pilot project (PI: White) from a P20 Center MH071897 (PI: Caine), 2009-10 Other Projects - Community inventory of strengths-enhancing or prevention-oriented formal approaches Community views of the University: trust needs to be earned

9. II. Specify Change Objectives and Implementation AgentsNatural Helpers Individuals, in our neighborhoods, who residents naturally turn to, or seek out in difficult times because of his or her concern, interest and innate understanding (Patterson & Memmott, 1992, p.22). Can break cycles of violence by changing norms? Strengthen mental wellness? “Miss Connie from the Block”

10. III. Form “Writing Group” - Decide Approach, Methods & Broad Ethical Considerations Sample: Inclusion criteria RSRB approved: Discuss protection, risks and benefits at both individual and community level Sources of referrals: CBOs/FBOs and community members Sources of data: Interviews, focus groups, observations (PhotoVoice), embedded in CBPR processes Qualitative Descriptive Analyses of focus groups (3), interviews (18), and field notes that examined natural helping, violence normalization, mental wellness and the learning collaborative Community researchers (training; Photo Voice) Be iterative: snowball, incorporate expertise of new partners (cultural congruence); re-analyze pilot data with systems science methods later if merited

11. Common Problems in How Communities Experience Research Irrelevant not responding to community concerns poor methodology; investigators lack the right expertise Exploitive Not sharing data/findings “Over-researched” & not partners in the process. Need structure and process for inclusion and knowledge of academic research enterprise, Minimal benefit (not building their research capacity and infrastructure, little allocation of resources and fiscal decision-making) Reinforcing past trauma historic power and control differentials activate culturally sensitive topics (e.g., ‘The Crescent’) 11

12. Partnership Processes to Navigate, Iteratively as Partners Expand Understand Context Trust & Commitment (historical, mission, roles/strengths) Power & Resource Sharing Diverse Membership & Informant Selection Get started and Maintain Reciprocal Relationship Establish shared research priorities & address differences Co-learning Capacity Build among Partners Apply Common Language in Writing and Review Sustain Partnerships, Program Impacts & Partners Ongoing assessments, improvements, share findings, celebrate

13. Unknown: Are There Connections Among Formal and Informal Adult Helping Networks?:Identify, Foster & Map Information Flow Relevant & Formal Prevention or Promotion Program/Organization/ Provider Natural Helper Individuals/ Family Members

14. IV. Co-Develop Intervention & Approach Aims: Is it Feasible and Acceptable to…? 1. Identifyneighborhood natural helpers 2. Convenenatural helpers to create and implement their own learning collaborative (NHLC) to share expertise around addressing violence and mental wellness Develop & conduct ecologically valid methods to identify, describe and pass on natural helping assess the NHLC potential for stated goals can be owned by members and reinforcing natural helping values 4. Coalesce a collaborative research team

15. Steps to Engage Stakeholders: Feasible without “Boiling the Ocean” Aim 1. Open call: agencies/city sectors (June ‘09) - 4 CBO/FBOs nominate NHCs for two focus groups - Develop tool by reviewing preliminary findings Aim 2. Use tools to nominate NH - Interview nominees; member check & select topics - 8 NHLC sessions; final focus group Aim 3. Community develops “products” to sustain; member check findings (key messages, key components of sessions) (July ‘10) - Focus group & Logic model development (July-Aug ‘11) - Decision to act as a network (versus a group) (Sept. ‘11)

16. Aim 4. Research Collaboration Social process in which researchers share their roles and responsibilities with community-based collaborators Pinto, R. (2009). Community Perspectives on Factors That Influence Collaboration in Public Health Research. Health Educ Behav, 36: 930

18. Yeates Conwell (2006) University of Rochester, R24MH071604

19. Essential Elements of CBPR Community-based participatory research (CBPR) is a collaborative research approach that is designed to ensure and establish structures for participation by communities affected by the issue being studied, representatives of organizations, and researchers in all aspects of the research process to improve health and wellbeing through taking action, including social change. To expand this definition, we conclude that CBPR emphasizes (1) co-learning about issues of concern and, within those, the issues that can be studied with CBPR methods and reciprocal transfer of expertise; (2) sharing of decision-making power; and (3) mutual ownership [benefit] of the products and processes of research. The end result is incorporating the knowledge gained with taking action or effecting social change to improve the health and well-being of community members. - p. 3; Viswanathan, M. et al. (July 2004). Community-based Participatory Research: Assessing the Evidence. AHRQ Publication No. 04-E022-2).

20. Who partner with, specifically? Working professionals Community leaders Community members Persons affected A stakeholder is anyone who has a stake in what happens. The term forces us to think about who will be affected by any project, who controls the information, skills and money needed, who may help and who may hinder. - D. Wilcox (1994). The Guide to Effective Participation. Brighton: Delta Press. 20

21. Community defined via culture An integrated pattern of human behavior that includes thoughts, communications, languages, practices, beliefs, values, customs, courtesies, rituals, manners of interacting, roles, relationships and expected behaviors of a racial, ethnic, religious, social or political group; the ability to transmit the above to succeeding generations; is dynamic in nature. (National Center for Cultural Competence, 2006)

23. Continuum of Collaborative Functions: Comparisons Himmelman, A. On Coalitions and the Transformation of Power Relations: Collaborative Betterment and Collaborative Empowerment, American Journal of Community Psychology, vol. 29, no. 2, April 2001, pp. 277-285 Himmelman, Arthur T. "Communities Working Collaboratively for a Change." In Resolving Conflict: Strategies for Local Government, edited by Margaret Herrman. Washington, D.C.: International City/County Management Association, 1994, 27-47.

24. Shallwani & Mohammed (2007). Community-Based Participatory Research: A Training Manual for Community-Based Researchers. Available at http://individual.utoronto.ca/sadaf/resources/cbpr2007.pdf; Adapted from Wilcox, 1994; Adapted from Arnstein, 1969

25. http://www.aaspire.org/about/cbpr.html

26. CBPR Development: Training Evaluation Model Partnership Agency Quality of interaction Community implementation of research Community-centeredness Application of CBPR principles Personal Knowledge & Capabilities Scientific content expertise Positive relationships Grantsmanship Community-engaged research Partnership Benefits - Recognized value of collaboration - Knowledge of community - Research objectives met - Observed measures of team success (e.g., grants, publications) Post-training White, A.M. et al. (in preparation). Exploring benefits of training academic-community research teams: Rochester’s suicide prevention training institutes of 2007-2010. 26

27. Evaluations & Grantsmanship Emphasize Partnership… Building, stages & approach (elements of and logic/models for development, etc.) Feedback Cycles Responsiveness to culture, community, capacity… Theoretical grounding Successes (evidence of partnership effectiveness, outcomes)

28. Pinto - dev of boards Pinto, R. et al (2011). Exploring group dynamics for integrating scientific and experiential knowledge in Community Advisory Boards for HIV research. AIDS Care, 1-8.

29. Natural helping

30. Natural Helping Networks of Two Low Income Urban Neighborhoods: Ties that Protect Against Violence Risks and the Promote Wellness (White et al, in preparation)

31. Aim 1: Who are the Natural Helpers? What distinguishes them from “nice people?”

32. Recommendations:Be Prepared to Present Partnerships How is community defined? Membership How is collaboration maintained? Individual/Partnership What “best practice” of community engagement, including characteristics of your investigator-community partnership, do you pass on? Capacities? Power and conflict resolution? Draw your partnership model. What are essential elements of CBPR implementation? Outcomes? Indicators of effectiveness? Key Functions? Partnership evaluation (process and outcomes) plans? Specific aims, budget, evaluation plan (methods/measures, personnel, stakeholder involvement, theory, etc. - Adapted from AHRQ report