3nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN)

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3nd African American Prostate Cancer Disparity
SummitProstate Health Education Network (PHEN)
V. Diane Woods, Dr.P.H., M.S.N., R.N. Assistant
Research Psychologist/Public Health Department of
Psychology, Social Psychology Lab University of
California Riverside, California

• Capitol Hill
• Rayburn House Office Building
• Washington, DC
• September 27-28, 2007

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Utilizing Community-based Participatory Research
(CBPR) to Engage African American Men in Clinical
Trials and Prevention

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Co-Authors

• Dr. Susanne Montgomery, Ph.D., M.P.H.
• Professor and Director, Center for Health
  Research
• Co-Director, Center for Health Disparities and
  Molecular Medicine
• Loma Linda University School of Public Health
• Scholastique Nikuze, M.P.H.
• Doctoral Student Oregon State University

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Supported in part by

• Loma Linda University Center for Health Research
• Loma Linda University Center for Health
  Disparities and Molecular Medicine
• NIH National Center on Minority Health and Health
  Disparities
• Association of Schools of Public Health (ASPH)
  and Centers for Disease Control and Prevention
  (CDC) Division of Cancer Prevention and Control
  Cooperative Agreement S1391-20/20
• African American Health Institute of San
  Bernardino County
• The California Endowment
• The Community Foundation of Riverside and San
  Bernardino Counties
• The California Wellness Foundation

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Presentation Objectives

• To demonstrate how community engagement processes
  work to increase African American male
  involvement in prevention and clinical research
• Discuss the complexity of health disparities
• Provide a framework for eliminating health
  disparities in African American men and prostate
  cancer

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Community-based Participatory Research (CBPR)

• Modified Bibliography
• Israel BA, Checkoway B, Schulz A, Zimmerman M.
  Health education and community empowerment
  Health Educ Q. 1994 21(2)149-170
• Aungst J, Haas A, Ommaya A, Green L. Exploring
  Challenges, Progress, and New Models for Engaging
  the Public in the Clinical Research Enterprise
  Clinical Research Roundtable Workshop Summary.
  Washington DC National Academy of Sciences, 2003
• Viswanathan M, Ammerman A, Eng E, Gartlehner G,
  et al. Community-based participatory research
  Assessing the evidence. AHRQ Publication
  04-E022-2. Rockville, MD Agency for Healthcare
  Research and Quality, July 2004.
• Mickler M. Community-based research partnerships
  J Urban Health. 2005 82(2 Suppl 2) ii3-ii12.

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Hallmarks of Community-based Participatory
Research (CBPR)

• Community member involvement to investigate their
  lived experiences
• Community stakeholders participate as equals
• Co-learning between community and researchers to
  generate relevant knowledge, create critical
  awareness, enhance the quality of the process and
  products of research
• Community members to provide descriptions, rich
  in detail, of the local social context and
  real-world constraints (i.e., replicability),
  which will improve conceptual robustness and
  explanatory utility of a study's findings
• Community involvement establishes congruence
  between the study and local reality (i.e.,
  increasing face validity), particularly for
  defining the problem, adapting methodology to
  specific ecologies and contexts, and determining
  the nature of acceptable solutions
• Community participation to improve adequate
  response rates and minimizing attrition because
  the research question and data collection methods
  are likely to be context sensitive and culturally
  relevant (i.e., dependability)
• The group process to move the group through
  different modes of participation as a process of
  empowerment

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Prostate Cancer Trends
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U. S. Prostate Cancer Incidence and Mortality
Rates by Race/Ethnicity, 1997-2001
Source Cancer Statistics 2005, American Cancer
Society
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Prostate Cancer Disparities
Mortality, 1998-2002
Incidence, 1998-2002
271
70
75
200
169
Age-adjusted incidence per 100,000
50
Age-adjusted mortality per 100,000
140
101
29
24
100
25
50
18
12
African American
Native American
Asian
Asian
Native American
Latino
White
White
Latino
African American
Advanced PCa 12.3 Blacks 10.5 Latinos 6.3
Whites
Latinos are more similar to African Americans
on socio-demographic characteristics but more
similar to Non-Latino Whites on clinical
presentation, treatment received, and 5-year
disease-free survival
Latini et al., Differences in Clinical
Characteristics and Disease-free Survival for
Latino, African American, and Non-Latino White
Men with Localized Prostate Cancer Data from
CaPSURE. Cancer 2006106(4)789-795.
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California Trends in Prostate Cancer by
Race/Ethnicity, 1988-2001
Source California Cancer Facts and Figures,
2005. American Cancer Society, California
Division and Public Health Institute, California
Cancer Registry.
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San Bernardino County, CaliforniaProstate Cancer
1999 Age-Adjusted Death Rates by Race/Ethnicity,
per 100,000 Men
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County Population Estimates
Source San Bernardino County Quick Facts, U.S.
Census Bureau, 2007 available at
http//quickfacts.census.gov
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Contributing Factors Regarding Black Men and
Prostate Cancer

• Low participation in prevention
• Under-utilization of screening
• Black male health behaviors
• Low early detection rates

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San Bernardino County Progressive Black Community
Involvement in Research

• 1997 Needs Assessment
• HIV
• Youth Violence
• Teen Pregnancy
• Diabetes
• 2001 Prostate Cancer Project
• 2003 Countywide Health Planning
• 2005 Disparities Research
• 2007 Health Systems Policy Advocacy

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Engagement MethodsQualitative Quantitative Data

• Key Informant Interviews
• Focus Group Interviews
• Community/Neighborhood Forums
• African Centered Questionnaires
• Countywide Public Forums
• Behavior Questionnaires
• Healthcare Provider Surveys
• Healthcare Market Analysis
• Observational Data

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San Bernardino County Prevention Studies with
African Americans

• 2001 2004 Prostate Cancer Prevention N
  277
• 2003 2005 Health Initiative Planning Project
  N 1,036
• 2003 2007 AAHI-SBC Community Advisory Council
  (CBPR) N 220
• 2005 - 2007 Breast Cancer Prevention in Women
  N 170
• 2007 Regional Health Initiative 2 different
  projects
• Cohort of 9 organizations
  Project title ?????
• Risk Reduction Project (75
  churches20,000 members)

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Impact

• Individual
• Community
• Health Systems

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Black Males Qualitative Themes

• Perceived lack of respect
• No one has engaged them in the past
• Physicians do not take them seriously
• Complexity of issues around poor outcomes
• Contribution of Black men not valued
• Already empowered, need to be given trusted
  information for making decisions
• Supportive of research as long as it is respectful

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Black Males Response

• 6-Point Strategic Actions
• Community-driven Peer Navigator Prostate Cancer
  Prevention Training Manual
• Community-based Prostate Cancer Prevention
  Decision-Making Tool

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6-Point Strategic Actions

• Partnerships
• Public Education
• Participatory Research
• Public Health Systems Changes
• Programs
• Policy

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Emergent Themes for Development of the
Community-driven Peer Navigator Prostate Cancer
Prevention Training Manual

• Disease Process
• Risk Factors Health
• Facts About Prostate Cancer
• Information Aids
• Testing
• Patients Feelings Concerns
• Interactive Communication Between Physician and
  Patient about Screening
• Communication Barriers

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Community-based Decision-Making Tool

• Develop Education Curriculum for
• Decision-Making Tool
• Delivery Methods and Settings
• Physician, Community and Health System Involvement

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Community-driven Engagement Research with African
American Men for Prostate Cancer
Prevention The Missing Link A
Call for Action [phone]