Defining Community in Community-Based Participatory Research

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1 Defining Community in Community-Based Participatory Research July 15, 2011 Sarah Gehlert, PhD E. Desmond Lee Professor of Racial & Ethnic Diversity Washington University in St. Louis

2 Community in Community-Based Participatory Research In conducting CBPR, we question what we mean by participatory and community-based We seldom question what we mean by community, however We consider the definition to be tacit

3 Defining Community by Race and Ethnicity We have tended to focus on race and ethnicity without questioning whether this is the most meaningful way of defining community This is a problem, because the definition of race is problematical & has been widely contested in research

4 American Anthropological Association Statement on Race, May 17, 1998 most human variation, about 94%, lies within so-called racial groups conventional racial grouping differ from one another only in about 6% of their genes racial beliefs constitute myths about the diversity in the human species scientists today have found that reliance on such folk beliefs.has led to countless errors

5 Relation Between Skin Color & West African Ancestry (%) in African Americans from Washington DC Source: Kittles et al., Calif J Health Promot, 2007

6 Problems with Self-Reported Race/Ethnicity Most CBPR relies on self-reported race/ethnicity numerous studies have demonstrated that self-reports of race do not accurately reflect genotype/ancestry racial/ethnicity based on self report may not allow the comparison that investigators intend to make (if self-reported race was meant to be a proxy for genotype/ancestry) this can skew results/outcomes, & interventions, practices, and policies based on those results may be ineffective

7 Plot of Individual Genetic Ancestry (%) from West African, European American, & Native American Parental Populations African American from Washington DC o European Americans from State College PA Source: Kittles et al., Calif J Health Promot, 2007

8 European Genetic Contribution in African-American Populations in the US Source: Kittles et al., Calif J Health Promot, 2007

9 Second Problem of Focusing on Race/Etnicity It may cause us to ignore the contributions of other determinants of health & health disparities, e.g., social factors and geography (communities defined by SES or geography)

10 Other Ways of Defining Community..By Socioeconomic Status and Other Social Factors

11 Life Expectancy at Birth for Black and White Males and Females in the US, White Male Black Male White Female Black Female Source: National Center for Health Statistics, 2003, tab. 27

12 Change in Life Expectancy at Age 25 by Race, Gender, and Education: Change in Life Expectancy (Yrs) Black Males White Males Black Females White Females Low Educ High Educ Race/Gender Source: Meara et al., Health Aff., 2008

13 Other Ways of Defining Community..By Geography or Rural and Urban Differences

14 Adult Admissions for Uncontrolled Diabetes Without Complications, by Residence and Race Rate per 100,000 population Metropolitan = 50,000+ residents Micropolitan=10,000 to 50,000 residents Non-Core = <10,000 residents Source: State Inpatient Databases analysis file, 2001

15 Poverty Rate by Residence, 2004 Source: US Department of Agriculture, Economic Research Service

16 Other Issues in Defining Community communities are not homogenous all members may not be of the same mind about a health issue, even how to prioritize community health needs a community may not be defined by shared geography (e.g. virtual communities of persons with rare or less common cancers) Gehlert 2010

17 Other Ways of Defining Community Not everyone identifies (or wants to identify) as part of a community (e.g., substance abusers, children with obesity living in Appalachia, homeless women) Unstructured communities-- Communities that exist because they have a shared trait, but which have no defined leadership or internal cohesiveness may have no sense of shared identity may reject group association may become structured for purposes of a research project in which the community partner is a community orgnaization

18 Implications Cancer Research Training a transdisciplinary CBPR training approach exposes trainees from a variety of backgrounds (social, behavioral, & biological) to cancer research in real-world settings the approach heightens their potential to conduct research that is meaningful & impactful exposure to an array of disciplines & community realities helps to ensure that cancer determinants at all levels are given equal attention & constructs like community are defined carefully Gehlert 2010

2014 Butte County BUTTE COUNTY COMMUNITY HEALTH ASSESSMENT

2014 Butte County BUTTE COUNTY COMMUNITY HEALTH ASSESSMENT EXECUTIVE SUMMARY 2015 2017 EXECUTIVE SUMMARY TOGETHER WE CAN! HEALTHY LIVING IN BUTTE COUNTY Hundreds of local agencies and community members