--thru clinical trials --thru engagement of the community uc...
TRANSCRIPT
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Participation of Minorities in NIH Research: --thru Clinical Trials
--thru Engagement of the Community UC Davis-Hmong Women’s Heritage Association
Moon S. Chen, Jr. & Kendra Thao UC Davis & Hmong Women’s Heritage Association
Sacramento, CA
NIHMD Session on: Ethics of Community Engagement
October 7, 2015
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Presentation Outline:
Clinical Trials Benefits vs Challenges: Changing the Culture
Community Perspectives-----Processes-----Productsnorit
participation in clinical trials.
Conclusions Recommend Lessons Learned-----Take awayshantegrates
multiple perspectives to mitigate the problem
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Clinical Trials: the Benefits
• Patients enrolled in clinical trials receive better care than non-participants.
• Patients enrolled in clinical trials live longer.
• Advancing the field is possible when clinical trials that are properly powered are completed. This is particularly relevant to prevention and behavioral research.
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Projected Cases of All Invasive Cancers in U.S. by Race & Ethnicity
142% increased incidence for Hispanics of any race
132% increased incidence for Asian/Pacific Islanders
76% increased incidence for American Indian /Alaska Natives
101% increased incidence for multiracial
64% increased incidence for Blacks
Smith B, Smith GL, et al. Future of Cancer Incidence in the United States: Burdens Upon an Aging, Changing Nation. J Clin Oncol 27 by American Society of Clinical Oncology. 2009
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NCI Clinical Trials by the Numbers
1
2,2
4
5
32
83
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Changing the culture starts with being at the table
Personalized Treatment
Research
Culture
Patient
MD IRB
Family
Patient care
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Comparison of Therapeutic Clinical Trials Accrual Rates at UCDCCC by Race/Ethnicity, Average
2011-2014
25%
20.0% 20%
17.6%
15.0% 15.1% 15% 13.8% 13.5%
12.7%
10%
5%
National Range of adult accrual for clinical
0%
trials (2-5%)
Non-Hispanic Overall African Asian Pacific Hispanic American Other (n=23)White accural American Islander (n=112) Indian (n=13)
(n=1109) (n=1438) (n=70) (n=111)
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Engagement of the Community in
Sacramento, CA Hmong Women’s
Heritage Association
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WHO ARE THE HMONG?
• American ally from the Vietnam Conflict • Fastest growing population in Sacramento County, 195.3% • Only 2.8% of Hmong Americans have at least a bachelor’s degree • The per capita income for Hmong Americans is $4,885
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Socio-demographics of Hmong P01 Participants
Socio-Demographics Characteristics Total % (n=260) Education No Formal Education/DK 63.85% BMI (Asian Cut Point) 23-27.5 43.08% >27.5 35.77% Overweight and Obese 80.77% Country of Birth Laos 73.08% Thailand 21.54% Language of Survey Hmong 91.02% English Fluency So-So/Poorly/Not at all/DK 84.23% Health Insurance Yes 90.77%
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Approach Utilize list of Hmong households
Determine eligibility
In person interview to: 1. Collect baseline data
Random Assignment
Intervention: Hepatitis B With CBO #1 LHW
Control: Diet & Exercise With CBO #2 LHW
Follow-up interview: self-reported testing
Verification of testing by checking medical records
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Partner with Hmong Women’s Heritage Association in CBPR approach
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Challenges and Barriers to Health Some of the health challenges that Hmong community faces: •60% of community are Limited English Proficiency •Low health literacy •Socioeconomic status (65% qualify for SNAP) •Cultural (East vs. West, Shaminism vs. modern health care, etc.) •Challenges with adjusting from farming to sedentary lifestyles
•Diseases that are prevalent •Gout •Type II diabetes •Hypertension •Hepatitis B
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Activities in Community Research
Lay Health Worker Home Visits
Group Sessions
Diagnostic Testing
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Examples of nutrition flip chart and the HBV flip chart
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Conclusions
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Abraham Maslow’s Hierarchy of Needs
Self Actualization
Esteem Needs
Love and Belonging Needs
Safety Needs
Physiological Needs
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PARADIGM
TOOLS
TANGIBLE BENEFITS TIME
TRUST
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“And just as you want people to treat you, treat them in the same way.” —Luke 6:31
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Essentials for ethics in Engagement of the Community
Time • Understand
community issues and concerns
• Build relationships • Outreach and
education
Trust • Ensure community is
involved in every step
Transparency • Culturally
appropriate ethnically specific outreach and education
• Continuous community input and feedback
• Community ownership
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“Longest journey begins with a single step….”
Slides created by: Julie Dang, MPH, CHES Slides by Julie HT Dang, MPH, CHES
Participation of Minorities in NIH Research:�--thru Clinical Trials�--thru Engagement of the Community �UC Davis-Hmong Women’s Heritage Association Slide Number 2Clinical Trials: the Benefits�Projected Cases of All Invasive Cancers in U.S. �by Race & EthnicitySlide Number 5Slide Number 6Changing the culture starts with being at the tableSlide Number 8Slide Number 9Slide Number 10Who Are the hmong?Slide Number 12Socio-demographics of Hmong�P01 ParticipantsApproachPartner with Hmong Women’s Heritage Association in CBPR approachChallenges and Barriers to HealthActivities in Community ResearchExamples of nutrition flip chart �and the HBV flip chartSlide Number 19Slide Number 20PARADIGMSlide Number 22Essentials for ethics in �Engagement of the CommunitySlide Number 24