Communities and Universities Working Together to Reduce Cancer Disparities Symposium 2005 UCLA

Transcription

1 Communities and Universities Working Together to Reduce Cancer Disparities Symposium 2005 UCLA Marjorie Kagawa Singer, Ph.D., M.N., M.A., R.N. UCLA School of Public Health and Asian American Studies Center

2 Marjorie Kagawa-Singer, PhD, MN, RN Principal Investigator Roshan Bastani, PhD Co-Principal Investigator Annette Maxwell, DrPH Co-Investigator Angela Jo, MD Co-Investigator Paul Murata, MD, MSPH Co-Investigator

3 California Demographics 2000 >36 million 1% 30% 49% 12% 8% Whites (excluding Hispanics) Asian or Pacific Islander American Indian, Eskimo, or Aleut Blacks or African American Latino

4 Los Angeles Demographics 9% 2000 Population = 9,519,338 5% 30% 43% 1% 12% Whites (Non-Hispanic) American Indian & Alaska Native Black or African American Asian or Pacific Islander Hispanic Two or More Races

5 Age-Adjusted Death Rates Due to All Causes, California Black White Other Hispanic Cuban Korean Japanese Chinese Puerto Rican Mexican Native American Laotian Thai Filipino Cam bodian Vietnamese Samoan Guamanian Hawaiian Other Asian Asian Indian Other Islander

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7 Five Cancers contributing to overall cancer incidence burden in males by race/ethnicity and geography Chinese Males Percent of All Cancers 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Colon (5) Esophagus (6) Liver (12) Stomach (20) Lung (26) Stomach (7) Colon (8) Nasopharynx (9) Liver (11) Lung (24) Rectum (5) Liver (8) Colon (10) Prostate (16) Lung (18) China Hong Kong/ Singapore US Chinese Geographic Region

8 Cancer Incidence Trends California, Rate per 100, Asian/Pacific Islander Hispanic Black Non-Hispanic White S. Kwong, 2004

9 Cancer Incidence Rates* by Race and Ethnicity, Rate Per 100,000 Men Women White African American Asian/Pacific Islander American Indian/ Hispanic Alaskan Native *Age-adjusted to the 2000 US standard population. Hispanic is not mutually exclusive from whites, African Americans, Asian/Pacific Islanders, and American Indians. Source: Surveillance, Epidemiology, and End Results Program, , Division of Cancer Control and Population Sciences, National Cancer Institute, 2004.

10 All Cancers Five-Year Average Annual Age-Adjusted Incidence and Mortality Rates per 100,000, California, Rate per 100, Incidence Mortality Asian/Pacific Islander Black Hispanic Non-Hispanic White S. Kwong, 2004

11 Cancer Death Rates*, by Race and Ethnicity, Men Women White African American Asian/Pacific Islander American Indian/ Hispanic Alaskan Native *Per 100,000, age-adjusted to the 2000 US standard population. Hispanic is not mutually exclusive from whites, African Americans, Asian/Pacific Islanders, and American Indians. Source: Surveillance, Epidemiology, and End Results Program, , Division of Cancer Control and Population Sciences, National Cancer Institute, 2004.

12 Cancer Sites in Which African American Death Rates* Exceed White Death Rates* for Men, US, Site African American White All sites Prostate Larynx Stomach Myeloma Oral cavity and pharynx Esophagus Liver and intrahepatic bile duct Small intestine Colon and rectum Lung and bronchus Pancreas Ratio of African American/White

13 Cancer Sites in Which African American Death Rates* Exceed White Death Rates for Women, US, Site African American White Ratio of African American/White All sites Myeloma Stomach Uterine cervix Esophagus Larynx Uterine corpus Pancreas Colon and rectum Liver and intrahepatic bile duct Breast Urinary bladder Oral cavity and pharynx

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15 Trends in Consumption of Five or More Recommended Vegetable and Fruit Servings for Cancer Prevention, Adults 18 and Older, US, Prevalence (%) Note: Data from participating states and the District of Columbia were aggregated to represent the United States. Source: Behavioral Risk Factor Surveillance System CD-ROM ( , 1996, 1998) and Public Use Data Tape (2000, 2003), National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention, 1997, 1999, 2000, 2001, Year

16 Trends in Overweight* Prevalence (%), Adults 18 and Older, US, Less than 50% 50 to 55% More than 55% State did not participate in survey *Body mass index of 25.0 kg/m2or greater Source: Behavioral Risk Factor Surveillance System, CD-ROM ( , 1998) and Public Use Data Tape (2003), National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention, 1997, 2000, 2004.

17 Cancer Mortality Trends California, Rate per 100, Asian/Pacific Islander Hispanic Black Non-Hispanic White S. Kwong, 2004

18 Female Breast Cancer Five-Year Average Annual Age-Adjusted Incidence Rates Rate per 100,000 per 100,000, California, S. Kwong, Chinese Filipino Japanese Korean South Asian Vietnamese

19 Female Breast Cancer Trends Rate per 100,000 California, Chinese Filipino Japanese Korean South Asian Vietnamese S. Kwong,

20 60 Liver Cancer Five-Year Average Annual Age-Adjusted Mortality Rates Rate per 100,000 per 100,000, California, Male Female S. Kwong, Chinese Filipino Japanese Korean South Asian Vietnamese

21 60 Stomach Cancer Five-Year Average Annual Age-Adjusted Mortality Rates Rate per 100,000 per 100,000, California, Male Female S. Kwong, Chinese Filipino Japanese Korean South Asian Vietnamese

22 Chu, K Differences between and Cancer Mortality Rates White Total API Chinese Filipino Japanese Nat. Haw. AI/AN Hispanic

23 Turning the Tide Partnerships Benefits Issue Community Research Voice Gives voice to the heretofore silent members of the communities Understanding of the greater good that can be accomplished with science Relevance/Validity Access to hard to reach communities Expands the research paradigm for more valid science Data produced will actually be reflective of the lived world of the community Communities that have been overlooked and understudied will be visible Expertise a members of their own community will be recognized as valuable Ability to have more representative samples of particular populations Test strategies in new populations for generalizability Improve the science by increasing validity and generalizability

24 CBPR Requires Collaboration throughout the research process: Question development Research design Data collection Analysis Interpretation Publication

25 Principles of Fully Participatory and Genuinely Collaborative Inquiry (1) Co-learning logic and skills Nature of evidence Establishing priorities Focusing questions Interpreting data Data-based decision making Connecting process to outcomes M. Quinn Patton 2002, /4.6

26 Principles of Fully Participatory and Genuinely Collaborative Inquiry (2) Participants in the process OWN the inquiry as EQUAL partners Authentically involved in making major focus and design decisions Draw and apply conclusions Participation is real not token Participants work together as a team and the facilitator supports group cohesion and collective inquiry M. Quinn Patton 2002, /4.6

27 Principles of Fully Participatory and Genuinely Collaborative Inquiry (3) All aspects of the inquiry, from research focus to data analysis, are undertaken in a way that is understandable and meaningful to participants Researcher or Evaluator = facilitator, collaborator, learning resource Community partners are CO-EQUALS M. Quinn Patton 2002, /4.6

28 Principles of Fully Participatory and Genuinely Collaborative Inquiry (4) Collaborating partners recognize and value their own and each other s expertise Status and power differences are minimized, as much as possible, practical and authentic w/o patronizing or game playing M. Quinn Patton 2002, /4.6

29 Turning the Tide Partnerships Tensions Issue Community Research Budget Control Overhead Needed for sustainability of programs to serve community and build capacity Needed for promotion and survival of the young investigators - Timeline 1-2 years 3-5 years and data cleaning Purpose Advocacy Application Research Design Benefit now Quality Improvement Evaluation No immediate benefit built into study Randomized controlled study = non-intervention community

30 CBPR Success Stories Quarterly cancer awareness newsletters In-service trainings to community leaders Cancer screening events at community celebrations Annual conference Student interns NCI-funded pilot projects Language-specific cancer materials High quality research that can impact the health of the community Training new/young researchers & health care providers Advocacy for policies that will improve the health of our communities

31 To make a difference in cancer care BE INVOLVED Educate ~ Advocate ~ And form Coalitions!!!