Community-engaged research for social & health equity: - PowerPoint PPT Presentation

Community-engaged research for social & health equity: Reflections, challenges, and promise in troubling times Meredith Minkler, DrPH Professor Emerita UC Berkeley School of Public Health Melbourne Social Equity Institute Symposium Feb.14, 2019

MSEI: Promoting (and doing) Community-based research & action Community of Practice across disciplines and beyond UM Community Fellows Program Lecture series for refugees Disability Rights Initiative Improving Children’s Lives Initiative MAEVe Unfitness to Plead Project & Disability Justice Support Program ASPIRE project à

Two kinds of equity & social justice Distributive Justice Fair distribution of exposure to social and environmental hazards– and to � resources for living �

The context of our work — Politics of austerity amid unprecedented wealth gap (26 people = bottom 50%) Oxfam, 2019 — Violence against women = 1 in 3 worldwide — “Addicted to incarceration” USA 2.3M; AU steep inc — Worldwide increase in xenophobia and hostility — USA Withdrawal of moral and political leadership on climate change, human rights etc. — USA Devaluing of science, truth....democracy

The other context: “The dizzying array of resistance efforts ” -- Angela Glover Blackwell 1000’s welcome Muslims in airports…and Latino refugees at the border AU efforts re. meeting mental, reprod health needs of refugees Unfitness to Plead Demands for and experiments with justice reinvestment (Cowra, NSW And Texas? “Make hope practical rather than despair convincing” – Jane Kenway, 1994

Community-engaged research for social and health equity …a collaborative process that equitably involves all partners in the research process & recognizes their unique strengths. It begins with a research topic of genuine concern to the community, and combines knowledge and action for social change to improve community health and wellbeing and eliminate social inequities. adapted from Kellogg CHSP, 2001; Israel et al., 2016

What’s in a Name? Participation Action & Research Education Community- Engaged Community-based PAR Participatory Action Research Research R A P d e m r o f n - i t s n i i m e F CBPR Mutual inquiry A c t i o n R e s e a r c h Participatory Research Participatory Evaluation It’s all about the WHO Indigenous ways of knowing question…

Principles of Community-Engaged Research — Recognizes community as a unit of identify — Builds on partners � strengths and assets — Focuses on locally relevant problems & social determinants of health — Co-learning, power sharing process — Systems development & local capacity building — Balances research and action — Commits for the long haul to enable sustainability Israel et al., 1998; 2018

Missing: CER embodies cultural humility � A life long commitment to self evaluation and self critique � understanding others’ cultures, working to redress power imbalances and to � develop and maintain respectful and dynamic partnerships with communities � Tervalon & Garcia, 1998

Cultural Humility: Essential to breaking down distrust of outside researchers � Researchers are like mosquitoes; they suck your blood and leave. � - Alaskan Native saying “Researchers are the real undocumented workers…” - Rev. Daniel Buford Parachute research “Nothing about us without us” -Deloria, 1992 -- People with disabilities and indigenous communities

Indigenist Critique of Western Epistemologies History is written by people in power 12 c/o Bonnie Duran

Maori contributions — Kanobi kitea (Maori) “the seen face”—importance of being physically present at cultural events — Cultural values, beliefs should be explicitly built into the research, and reflected in various stages, including reporting back, sharing knowledge — Don’t trample on the mana (rights) of the people — Connect the research to concerns for social justice Linda Tuhiwai Smith

Continuum of community-engaged research Context influences Participation in Partners in research study design and dissemination of results protocol design, research questions Traditional CBPR Level of Community Engagement Science No influence on research design Opinions actively Leverages study solicited through pre & results & post data collection partnerships to promote social change From Study Participant… …to Research Partner Balazs & Morello-Frosch, 2013

Challenges from skeptical colleagues at each stage of continuum — Generates action -oriented — Where’s the objectivity? research Science creds? — Research topic, methods — What happened to evidence based on participant -based? And we know priorities, lived experience? best… — Participants involved in — Say whaaat? With no data interpretation formal research training? — Co-ownership of findings??! C. Vaughn, in press

On the Plus side… Strong and growing evidence-base for CBPR — Systematic reviews and Anderson et al., 2015; de las Neusces et al., 2015; Drahota et meta analyses on health & al., 2016; Bowen, 2013 social outcomes; RCTs, CETs — Gov. reports on impacts of Popay et al., 2007; Staley, CE on population health 2009 initiatives Minkler et al., 2012, & — Multi-method case studies 2018 Cacari-Stone et al., on community, policy 2018 impacts Wallerstein et al., 2018; Israel et al., — Longitudinal studies of In press partnership processes & outcomes

Many top “traditional researchers” and institutions expound value & necessity of CER — Pix of Sir Michael Marmot — Engage community in developing health & social Picture of marmot goes here — indicators because “A good idea is harder to come by than more data” Indicator from community partner: “Having enough money to buy birthday presents for your grandchildren” Sir Michael Marmot, Prof of Epi & Public Health, uni of London; IOM: CBPR = of 8 new areas President, World Medical Assoc. in which all SPHs should Uni of Sydney grad offer training (Gebbie et al., 2003

More explicit integration of relevant conceptual frameworks: Social Ecological Model Policy & Laws, Gov Programs, built environment Structures Community High level community engagement /decision making Organizational Schools, workplaces, clinics Interpersona l Family, friends, cultural contexts Individual beliefs and behaviors Over the lifespan In CBPR for equity, must target the contextual or SDoH at multiple ecological levels that create and maintain inequities Trickett & Beehler, 2013 CDC adaptation of the social ecological model (SEM) of health promotion . http://www.cdc.gov/nccdphp/dnpao/state-local-programs/health-equity/framing-the-issue.html

Using and measuring empowerment as a multi-level, multi-dimensional construct “ Empower people” v. “Creating conditions…” Ø LEVELS “A social action process by Ø Individual which individuals, communities Ø Organizational and organizations gain mastery Ø Community or Neighborhood over their lives in the context of changing their social and Ø DIMENSIONS political environment to Ø Participation improve equity and quality of Ø Control life” Ø Critical awareness - Wallerstein, 1992 Ø EMBODIES Ø Social change processes Ø Transforming conditions Zimmerman, 2000; Minkler et al., 2014

Conceptual Model of CBPR Contexts Intervention Outcomes Partnership Processes & Research Intermediate Individual • Policy Environment Social Political Relationships Processes Outputs Characteristics • Sustained Partnership & Structural & • Empowerment Policy Integrate Culture- • Shared Power Relations in Community Centered Knowledge Interventions Research Partnership Health • Cultural Reinforcement Structures Issue • Individual / Agency Partnership Empowering Importance Capacity Processes Synergy CBO s Agency • Research Productivity Funders Long-term • Community Appropriate Capacity Community Collaboration Community Academic Research Transformation & Involved in Trust & Mistrust • Social Justice Design Readiness Research Government Health Care • Health / Health Equit y Visual from Amos Health 2017 Adapted from Wallerstein et al., 2018 University of New Mexico Website: https://cpr.unm.edu/research-projects/cbpr-project/cbpr-model.html Increased theoretical development

Use of Model — Model can be dynamic and adapted to diverse contexts and languages — Both qualitative tools and quantitative measures foster collective reflection and partnership evaluation — Tools can promote equity outcomes Translation of findings to policies, practices — Build knowledge democracy — — Networks of use across the country and globally Role of Think Tank across United States — ICPHR Evaluation Learning Community; Canada; Brazil; Latin America; — Sweden; Germany Wallerstein et al., 2018 *Internat’l. Collaboration of Participatory Health Research

CBPR Model adaptation from AMOS, Nicaragua Health/ Intervention Social Context Partnership (Programs)/ Justice Research Outcomes

New Tools for assessing process and outcomes Engage for Equity Tools Claiming Your Principles — River of Life/Historical Timeline — Visioning with the CBPR Model — Surveys, Interviews, Focus Groups — Partnership Data Report — Promising Practices Guide engageforequity.org