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3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington, DC September 27-28, 2007 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

3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

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Page 1: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

3nd African American Prostate Cancer Disparity

SummitProstate Health Education Network (PHEN)

Capitol HillRayburn House Office BuildingWashington, DC

September 27-28, 2007

V. Diane Woods, Dr.P.H., M.S.N., R.N.Assistant Research Psychologist/Public Health

Department of Psychology, Social Psychology LabUniversity of California

Riverside, California

Page 2: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 2

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

Page 3: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 3

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

Page 4: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 4

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

Page 5: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 5

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

Page 6: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 6

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.

Page 7: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 7

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

Page 8: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 8

Prostate Cancer Trends

Page 9: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 9

U. S. Prostate Cancer Incidence and Mortality Rates by Race/Ethnicity, 1997-2001

167

271

140

101

29

70

23 13

0

50

100

150

200

250

300

Cas

es p

er 1

00,0

00

Incidence Mortality

White African American Hispanic Asian/Pacific Islander

Source: Cancer Statistics 2005, American Cancer Society

Page 10: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 10

Africa

n

Amer

ican

Whi

te

Latin

oAsi

an

200

100

Ag

e-a

dju

ste

d i

nc

ide

nc

e

pe

r 1

00

,00

0

271

101

140169

50

Nativ

e Am

eric

an

Whi

teLa

tino

Asian

75

50

25

70

12

2429

18

Mortality, 1998-2002

Ag

e-a

dju

ste

d m

ort

ali

ty

pe

r 1

00

,00

0

Incidence, 1998-2002

Nativ

e Am

eric

an

Africa

n

Amer

ican

Prostate Cancer Disparities

Advanced PCa12.3% Blacks10.5% Latinos6.3% Whites

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 2006;106(4):789-795.

“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”

Page 11: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 11

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.

Page 12: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 12

San Bernardino County, CaliforniaProstate Cancer 1999 Age-Adjusted Death Rates by Race/Ethnicity, per 100,000 Men

93.7

32.624.8

33.5

0

20

40

60

80

100

Source: San Bernardino CountyDepartment of Public Health, 2002

Black

White

Hispanic

All Races

Page 13: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 13

County Population Estimates

San Bernardino County, CA 2006 Population Estimate, 1.99 million

Percent by Ethnicity

Latino, 44.8%

White, 38.4%

Black, 9.5%

Asian, 5.6%

American Indian/Alaska Native, 1.4%

Pacific Islanders, 0.4%

Source: San Bernardino County Quick Facts, U.S. Census Bureau, 2007 available at http://quickfacts.census.gov

Page 14: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 14

Contributing Factors Regarding Black Men and Prostate Cancer Low participation in prevention

Under-utilization of screening

Black male health behaviors

Low early detection rates

Page 15: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 15

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

Page 16: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 16

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

Page 17: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 17

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 churches:20,000 members)

Page 18: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 18

Impact

Individual

Community

Health Systems

Page 19: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 19

Black Male’s 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

Page 20: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 20

Black Male’s Response

6-Point Strategic Actions

Community-driven Peer Navigator Prostate Cancer Prevention Training Manual

Community-based Prostate Cancer Prevention Decision-Making Tool

Page 21: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 21

6-Point Strategic Actions

Partnerships Public Education Participatory Research Public Health Systems Changes Programs Policy

Page 22: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 22

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 Patient’s Feelings & Concerns Interactive Communication Between

Physician and Patient about Screening Communication Barriers

Page 23: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 23

Community-based Decision-Making Tool

Develop Education Curriculum for Decision-Making Tool

Delivery Methods and Settings

Physician, Community and Health System Involvement

Page 24: 3 nd African American Prostate Cancer Disparity Summit Prostate Health Education Network (PHEN) Capitol Hill Rayburn House Office Building Washington,

Woods, September 28, 2007 24

Community-driven Engagement Research with African American Men for

Prostate Cancer Prevention

The Missing Link…

A Call for Action (909) 880-2600