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Preparing to Work With Systems and Stakeholders in SBIR

Ann Marie White, Ed.D.Assistant Professor

University of Rochester Medical CenterJuly 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

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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 of the Mental Health Promotion Task Force of Rochester and Monroe County; PI=AM White [P20 MH071897]

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SocietalSocietal CommunityCommunity RelationshipRelationship IndividualIndividual

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)

PovertyHigh crime levelsHigh residential mobilityHigh unemploymentLocal illicit drug tradeWeak institutional policiesInadequate victim care servicesInadequate community cohesion

Psychological/personality disturbance (d/o)Alcohol/substance abuseVictim of child maltreatment or current abuseViolent behavior—past or currentSuicidal behavior—past or current Access to lethal means

Exposure to poor parenting or violent parental conflictFractured family structuresFamily history of suicideCurrent relationship/marital turmoil—participant in intimate violenceFinancial, work stress; under- or unemployed Friends & family that engage in violence

Unstable social infrastructureEconomic insecurityDiscrimination: gender; race; other Policies that increase inequalitiesPovertyWeak economic safety netsCultural norms that support violenceAccess to lethal methods (firearms)

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Translational Sciences: T1-T3

Annals of Family Medicine, 2007, 5(2), 185-86

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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

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Methodological•Paradigm/Conceptualization•Epistemology

•Empirical•Non-empirical

QualitativePluralistic

•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

ValuesCultural beliefs•Spirituality•Religion•Concepts of:

•Family•Respect •Communal vs. Individualistic•Cooperation vs. Competition•Interdependence vs. Independence

•Rituals•Traditions•World view

Domains and Variables to consider in EBPs among communities of color

Transactional •Language•Engagement•Synchronous goals•Relationship•Engaging youth, families, & consumers in research•Availability of providers

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

Developing, Adapting, Choosing

and Using Evidence Based

Treatments/Empirically SupportedTreatments

Historical•Racism•Ethnocentrism•Colonialism•Displacement•Genocide•Prejudice•Discrimination•Exploitation

K. Martinez. (June 2008). Evidence Based Practices,

Practice Based Evidence and Community Defined Evidence in

Multicultural Mental Health. NAMI Annual Convention,

Orlando, Florida.

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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.

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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

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II. Specify Change Objectives and Implementation Agents

Natural HelpersIndividuals, 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”

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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

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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’)

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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

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Unknown: Are There Connections Among Formal and Informal Adult Helping Networks?:

Identify, Foster & Map Information Flow

Natural Helper

Relevant & Formal Prevention or PromotionProgram/Organization/ Provider

Individuals/Family Members

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IV. Co-Develop Intervention & Approach Aims: Is it Feasible and Acceptable to…?1. Identify neighborhood natural helpers

2. Convene natural helpers to create and implement their own learning collaborative (NHLC) to share expertise around addressing violence and mental wellness

3. Develop & conduct ecologically valid methods to

a) identify, describe and pass on natural helping

b) assess the NHLC potential for stated goals

c) can be owned by members and reinforcing natural helping values

4. Coalesce a collaborative research team

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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)

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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

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SH AR E A lli a nceAC A D E M ICP A R T N E R S

Psy ch i atr y M e d icin e C o m m u n i ty &

Pr e v en tiv eM e d icin e

N u r s in g

C O M M UN IT YP A R T N E R S

L if eSp a n

E L D E R SO U R C E

C F C

(P ilo t )P r o jec ts

R e se ar ch F in d in g s

P ro c ess Tr a n sfo r m a tio n

M e asu r a b le c h an g e s inse rv ic es a n d sy s te m s

OU T C O M E S1 . C o n tin u i n g e v o lu ti o n o f c o m m u n ity - b a sed p a rt n er sh ip2 . Ne w m o d els o f c o m m u n ity b a se d co r e f o r sen io r s3 . Ne w ap p lic a tio n s f o r r es ea rc h g ra n ts se rv i ce g ra n ts

( Op e r atio n a l Su p p o r t)

1 7 Se p t 2 0 0 3

C QI

C Q I = C o n tin u o u s Q u a lity I m p r o v em e n t

C QI

Yeates Conwell (2006) University of Rochester, R24MH071604

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Essential Elements of CBPRCommunity-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).

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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.

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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)

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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.

Use Frequently

UseSometimes

Hardly Ever Use

NetworkingExchanging Information

CoordinationExchange InformationAlter Activities

CooperationExchange InformationAlter ActivitiesShare Resources

CollaborationExchange InformationAlter ActivitiesShare ResourcesEnhance Capacity of Another

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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

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

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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.

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Evaluations & Grantsmanship Emphasize Partnership…

Building, stages & approach (elements of and logic/models for development, etc.)

Feedback Cycles Responsiveness to culture, community,

capacity…Theoretical groundingSuccesses (evidence of partnership

effectiveness, outcomes)

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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.

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Natural helping

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

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Aim 1: Who are the Natural Helpers? What distinguishes them from “nice

people?”

How much does this person show this quality of…? How much does this person show this quality of…? (1=not at all to 5= all the time)(1=not at all to 5= all the time)

- Having a finger on the pulse of the neighborhood - Actively listening - Building rapport (e.g., connecting to people culturally) - Sharing life experiences, honestly- Being a resource- Taking action or being a doer- Actively caring for the neighborhood- Connecting with & being respected broadly by young people

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Recommendations:Be Prepared to Present Partnerships

How is community defined? MembershipHow 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