1 Partnering to Improve Health: the Science of Community Engagement Researchers and Communities: Summary of Best Methods and Models of Selecting Meaningful Outcomes Sergio Aguilar-Gaxiola, MD, PhD Professor of Internal Medicine Director, Center for Reducing Health Disparities Director, Community Engagement Component, CTSC UC Davis School of Medicine Arlington, VA May 14, 2010

Strength is in our culture, but let us show you our success, not use your measurements of success… We are developing our own workforce, but not getting recognition because you use your measurements to measure us… We cant only treat children, we have to treat the whole family NA Community Leader

3 There is a way you talk to people in our communities…You have to know how to talk to black people. Dr. Vanessa Siddle Walker, 2010 Source: Kindly Provided by Forrest Toms, 2010.

4 Words of Wisdom The most basic of all human needs is the need to understand and be understood. The best way to understand people is to listen to them. Ralph Nichols

The Road(s) Ahead: Outcomes that Matter Who benefits? Matter to Whom? Who Defines the Outcomes? How do we Know When we Get There? Wrong Turn!

A Change in Strategy is Needed their role should not be limited to just being subjects of research While it is important to conduct research involving diverse communities, their role should not be limited to just being subjects of research. Partnerships should be developed they can participate fully in the formulation, design, implementation, and evaluation of promising and best practices models Partnerships should be developed with diverse communities so they can participate fully in the formulation, design, implementation, and evaluation of promising and best practices models. Source: Blasé & Fixsen, 2004, National Implementation Research Network, Louie de la Parte Florida Mental Health Institute, Consensus Statement on Evidence-Based Programs and Cultural Competence.

7 Go in search of people. Begin with what they know. Build on what they have Chinese proverb

We must Restore Balance to the Community-Academic Partnership Source: Ahmed,SM, NIH Council of Public Representatives, April 2010.

Rationale Contextual Rationale Community Rationale Academic Rationale Policy Rationale Source: Ahmed,SM, NIH Council of Public Representatives, April 2010.

Contextual Rationale Interest in the contextual factors (e.g. social, economical, cultural, environmental, etc.) Enhance the relevance and use of the research data by all partners Source: Ahmed,SM, NIH Council of Public Representatives, April 2010.

Community Rationale Community demand Incorporation of local knowledge which overcome community distrust of academic research Provides resources (e.g. funds, training, job opportunities for communities) Active participation of the target population Source: Ahmed,SM, NIH Council of Public Representatives, April 2010.

Academic Rationale The challenge of Translational Research Failure of Traditional research approaches: –98% of Americans receive their health care outside of academic medical centers Enhance the relevance and use of the research data by all partners Source: Ahmed,SM, NIH Council of Public Representatives, April 2010.

Policy Rationale IOM 2002 report, Who Will Keep Public Healthy: Educating Public Health Professionals for the 21 st Century. Public health workers need additional training to meet new challenges posed by globalization, medical advances and an aging and increasingly diverse population. Demand for elimination health disparities Potent alternative to outside expert driven research Source: Modified from Ahmed,SM, NIH Council of Public Representatives, April 2010.

14 Agencies University CBOs Community Structural Dynamics Individual Dynamics Relational Dynamics Group Dynamics Equitable Partnerships Intervention Fits Local /Cultural Beliefs, Norms & Practices Reflects Reciprocal Learning Outcomes Policies/Practices Sustained Interventions Changes in Power Relations Cultural Renewal Disparities Social Justice Contexts Social-economic, cultural, geographic, political-historical, environmental factors Policies/Trends: National/local governance & political climate Historic degree of collaboration and trust between university & community Community: capacity, readiness & experience University: capacity, readiness & reputation Perceived severity of health issues Structural Dynamics: Diversity Complexity Formal Agreements Real power/resource sharing Alignment with CBPR principles Length of time in partnership Individual Dynamics: Core values Motivations for participating Personal relationships Cultural identities/humility Bridge people on research team Individual beliefs, spirituality & meaning Community reputation of PI Relational Dynamics: Safety Dialogue, listening & mutual learning Leadership & stewardship Influence & power dynamics Flexibility Self & collective reflection Participatory decision-making & negotiation Integration of local beliefs to group process Task roles and communication CBPR System & Capacity Changes: Changes in policies /practices -In universities and communities Culturally-based & sustainable interventions Changes in power relations Empowerment: -Community voices heard -Capacities of advisory councils -Critical thinking Cultural revitalization & renewal Health Outcomes: Transformed social /econ conditions Reduced health disparities Group Dynamics Intervention adapted or created within local culture Intervention informed by local settings and organizations Shared learning between academic and community knowledge Research and evaluation design reflects partnership input Bidirectional translation, implementation & dissemination System & Capacity Changes Improved Health Contexts Intervention Outcomes Socio-Economic, Cultural, Geography & Environment National & Local Policies/Trends/Governance Historic Collaboration: Trust & Mistrust Community Capacity & Readiness University Capacity & Readiness Health Issue Importance Appropriate Research Design Figure One: CBPR Conceptual Logic Model (adapted from: Wallerstein, Oetzel, Duran, Tafoya, Belone, Rae, What Predicts Outcomes in CBPR, in CBPR: From Process to Outcomes, Minkler and Wallerstein (eds). San Francisco, Jossey- Bass, 2008.)

Community Outcomes Community Health Improvement Goals Community Participation Community & Academic Leadership Development Community & Academic Science Partnership Community Health Improvement Intervention Evidence Dissemination Individual Outcomes Community Health Improvement Capacity Development New Community Programs Partnered evaluation Adapted from Wells KB, Staunton A, Norris KC, et al. Building an academic-community partnered network for clinical services research: the Community Health Improvement Collaborative (CHIC). Ethn Dis. 2006;16(1 Suppl 1):S3-17. Projected Outcomes for Effective Community-Academic Partnering Community Outcomes

Communities and Universities have Different Desired Outcomes Community Specific mission with matching priorities Service/Civic Ethic/social justice University Specific mission with matching priorities Scientific Identify and focus on areas of overlap across community & university missions and priorities. Health Policy, Local Public Health Agency, Community Clinics Chung B, et al. Story of stone soup: a recipe to improve health disparities. Ethn Dis. 2010; 20[Suppl 2]:s2-9–s2-14.

The Multi-way Decision Matrix What outcomes distinct are associated with different intervention approaches? How do characteristics of target population affect outcomes? How are outcomes affected by history, resources, and contexts? O ipc|t The conditional probability of an outcome, for this type of intervention with this population in this context, given what is known at the present time. Source: Rapkin, 2010

Community Health Connections, UW ICTR-CAP A Logic Model For Evaluating Community Engagement: Source: Hogle, J.A, Spearman, C.J., Cross Dunham, N., Cohn, T. University of Wisconsin Institute for Clinical and Translational Research, 2010.

20 CTSAs Community Engagement: Where are we at? Source: Michener, L., 2010 There is a progression to community engagement that could be characterized in three phases: 1.Discovering each other - gifts, strengths, needs, and preferences - how to work together, how not to, and to what aims. This generally takes time, can be done well or poorly, and has been the focus of much of the CE KFCs efforts. 2.Beginning to collaborate on projects of common interest - including identifying opportunities, working out power/funding issues, sharing information and credit. 3.Forging respectful mature partnerships which easily engage in projects together and are shaped by each other so that neither/none is complete alone.

Yaggy S, Michener L, Yaggy D, Champagne M, Silberberg M, Lyn M, Johnson F, Yarnall KS. Just for Us: An Academic Medical Center-Community Partnership to Maintain the Health of a Frail Low-Income Senior Population. The Gerontologist 2006;46(2):

24 Summary of Methods, Models, and Outcomes Lee Green, MD, MPH

A Framework Toward Positive Health Outcomes for ALL Public spending should be consistent with the best science (includes community-defined evidence); Identify the issues and build on the strengths; Bring diverse partners to the table; Engage in shared, strategic planning involving primary care, schools and communities; Identify interventions that are culturally and linguistically effective and implementation strategies; Develop metrics and outcomes that matter to individuals, populations and policy makers Evaluate the effort and use the data to continuously improve the strategies; Invest in prevention and early intervention in addition to health services.