Transcript Hepatitis B

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title style B
Community Engagement Project
American Public Health Association Conference
November 7, 2010
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A Project of
International Community Health Services
and
Hepatitis B Coalition of Washington
A Program of WithinReach
Funded in part by the OMH through a sub-contract with the Association of Asian
Pacific Community Health Organizations (AAPCHO) and the Gilead Foundation
Authors
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Michael McKee, M.Ed.,
Health Services Director, International Community
Health Services
Vice – Chair, Hepatitis B Coalition of Washington
Kim Nguyen, MSW,
Program Manager, WithinReach
Terry Chen, BS,
AmeriCorps Patient Navigator, International
Community Health Services
Edison Tsui, BS,
AmeriCorps Patient Navigator, International
Community Health Services
Abstract
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International Community Health Services, a nonprofit community health center
located in Seattle/King County, Washington and the Hepatitis B Coalition of
Washington State, implemented a community mobilization project developing
grassroots support for chronic hepatitis B awareness and screening. This
Hepatitis B Community Engagement Project may lead to a larger Seattle Hep
B Free program based on the San Francisco Hep B Free model. It focuses on
refugee and immigrant communities identified by CDC as high risk for chronic
hepatitis B, including Asian Americans, Native Hawaiians and other Pacific
Islanders, and East Africans. Additionally, through this work we aim to
increase appropriate adult immunization and to remove the stigma
surrounding hepatitis B among these populations, pregnant mothers who are
positive, and those who are chronically infected and their family and
household members.
In the fall of 2009, 18 “Talking Circles” (focus groups) and 8 key informant
interviews were conducted with service providers and community members.
The goals of these conversations were to strengthen and expand
partnerships, assess hepatitis B awareness levels, discover barriers to
education and treatment, and elicit recommendations for culturally
appropriate health messages and strategies.
In April 2010, feedback and lessons learned from these conversations will be
shared at a community “Launch”. Materials developed from the input,
including “Talking Points” for use by community based organizations and
other service providers, will be distributed. Public messages will be
disseminated with involvement from ethnic media, including print and radio.
Plans for the next steps in hepatitis B advocacy will also be discussed.
Why Address Hepatitis B
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• Inspired by the San
Francisco Hep B Free
campaign initiated by
Dr. Sam So and Janet
Zola,
• Large Asian American,
Native Hawaiian, and Other
Pacific Islander (AA &
NHOPI) populations
• Increasing refugee and
immigrant diversity in
Puget Sound, WA state
Hepatitis B is Serious – Global
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Impact
• It’s a common disease!
• Over 350 million people in the world have chronic
hepatitis B 1
1
Centers for Disease Control and Prevention. Hepatitis B FAQs for Health Professionals. Available at: http://www.cdc.gov/hepatitis/HBV/HBVfaq.htm#b12.
Accessed January 28, 2010.
2 World Health Organization. Hepatitis B. Available at: http://www.who.int/emc-documents/hepatitis/docs/whocdscsrlyo20022/disease/world_distribution.html.
Accessed June 1, 2004.
Hepatitis B Disparities
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• AA & NHOPIs account for
• 78% of the 350 million people
worldwide with chronic hepatitis B1
• More than 50% of the chronic
hepatitis B cases in the U.S.
(estimated 750,000)2
• 1 in 10 AA & NHOPIs in the United
States are positive for chronic
hepatitis B 1
• Asians have the highest liver
cancer rates of any ethnic group 3
1
Stanford School of Medicine. Hep B Education FAQ. Available at: http://liver.stanford.edu/Education/faq.html.
Asian Liver Center at Stanford University. Hepatitis B in Asian Americans. Available at: http://liver.stanford.edu/index2.asp?lang=eng&page=hepinasians.
Accessed June 1, 2004.
3 International Agency for Research on Cancer. GLOBOCAN 2000. Available at: http://www-dep.iarc/fr. Accessed June 1, 2004.
2
ICHS and HBCW Partnership
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International
Hepatitis B Coalition of
Community Health
Services
Expand the current local
infrastructure to support a
Seattle-King County
community awareness
campaign targeting the
Asian American (AA),
Native Hawaiian and Other
Pacific Islander (NHOPI),
immigrant and refugee
communities, and the
general public
by mobilizing stakeholders
from those communities
+ WA (WithinReach)
Mutual Goals
Shared Resources
Dedicated to reducing
hepatitis B disease and its
complications through
innovation, education, and
community partnership.
Focus areas:
1. Reaching families and
household members of
HBsAg positive individuals
2. Expanding outreach
efforts to refugees,
immigrants, and other high
risk populations
Community Engagement Project
Community Engagement
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Strategies
• Use a community
based partnership
model
• Develop a shared
agenda
• Focus initially on
“process” rather than
“outcomes”
• Promote community
based policy change
Community Conversations
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“Talking Circles” and
1:1 Interviews, Fall
2009
• All participants voiced
their opinions
• To hear from audience;
not to learn about
hepatitis B
• Relied on both current
and newly built
relationships
• Incentives provided
• Translated consent forms;
not IRB
Participant Information
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• 194 people participated in
18 “Talking Circles” and 8
key informant interviews
• 56% female, 44% male
• All ages were represented
• Of the 26 conversations:
• 3 youth groups
• 9 community
member/client groups
• 5 service provider groups
• 9 clinic staff, providers,
Perinatal Hepatitis B
Coordinators
Age of “Talking Circle”
Participants and Key
Informants
Age Range
Percent of Total
Under 21
19%
21 – 30
12%
31 – 40
12%
41 – 50
21%
51 – 60
14%
61 – 70
11%
71 – 80
3%
Unknown
8%
Participant Information
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Participant Demographics by Ethnicity
60
# of Participants
50
40
30
20
10
0
African
Vietnamese
Chinese
Pacific Islander
Ethnicity
Community Member
Other
Korean
Caucasian
Service Provider
Participants with multiethnic backgrounds were counted as one participant and included in each
ethnicity category specified. Participants with incomplete consent forms were excluded from the
ethnicity data. And, if not indicated, ethnicity was coded as “other”.
Community Conversations - Knowledge
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• Heard of hepatitis B, but specific knowledge is low;
Confusion regarding the different types of hepatitis
• Hepatitis B described via its symptoms (“yellow
fever”) in some communities
• Misconceptions about the disease are high
(prevention, transmission, treatment)
• Confusion about why one family member with chronic
hepatitis B is on medications while another is not
• Confusion of vaccine effectiveness (good for life,
what if I missed the 3 rd shot?)
• Unfamiliarity with cultural practices of community,
population
• Belief in traditional and Western medicine
Community Conversations - Barriers
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No sense of urgency about it
•
• Reluctance to discuss hepatitis B as a sexually
transmitted disease, and/or in general
• Cost and lack of insurance
• Misconceptions about immigration policies, including
vaccination and testing
• Assumptions about routine exams including chronic
hepatitis B screening
• Insufficient resources:
• time at office visits to address concerns, especially when there
are cultural and linguistic barriers (such as herbal treatments)
• lack of access to interpreters
• no home visits
• multiple (life) priorities (compounded by environmental issues)
Community Conversations - Strategies
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• Participants agreed on many successful strategies
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Working through key community leaders
Using community events to raise awareness
Conducting outreach at places of worship
Using multiple forms of media (e.g. DVDs, ads, articles, radio,
and TV),
Connecting to social events, food – culturally appropriate
Personalizing hepatitis B – how do you message, not market?
Protecting oneself is a step towards protecting one’s family
Cross generational and cultural approaches to education
• Use messages that are short, simple, translatable,
and culturally sensible
• Share existing resources, especially translated
Recommendations for All
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• Know your hepatitis B status - get tested
• Talk about chronic hepatitis B with family, friends,
neighbors, and colleagues – encourage testing
• Talk with your doctor
• Organize and host trainings, presentations, and
events about hepatitis B prevention, care, and
treatment for your staff, colleagues, community
members, and networks
• Identify someone from your organization who can be
a hepatitis B champion
• Clarify misconceptions/myths
• Join the Hepatitis B Community Engagement Project
Recommendations for Social and Healthcare
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Providers
• Determine if your clinic is routinely testing those at risk
for chronic hepatitis B; if not, look into establishing
testing policy
• Identify your clients’ demographics – educate staff and
colleagues about their cultural practices and values
that can impact delivery of care
• Tailor and conduct culturally appropriate trainings
about hepatitis B prevention, care, and treatment with
your staff and colleagues
• Identify ways to integrate hepatitis B education and
policies into your organizational systems
Sharing with Communities
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• Shared findings and resources at Launch, April 2010
• Engagement work highlighted at Annual Hepatitis B
Forum, May 2010
Photo courtesy of Alan Alabastro photography
Photo courtesy of Bob Hayes
Challenges
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Resources: Staffing - Funding/Economy – Partners - Time
Motivation: Priorities (collaborative, comprehensive, not
competing) - Political Will
Messaging: Message Fatigue
Cultural Competence: New partners - Relevance and
integration to values, beliefs, norms - Listening and
Learning
Next Steps for Workgroup
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• Establish regular meeting time to increase
participation, efforts
• We need more voices on the work group
• Report back to community participants
• Identify several communities ready for more
engagement and educational activities
• Continue to seek funds to further this work
and opportunities to share this model
Engagement “Councils”
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Community engagement and activation of
educational efforts and initiatives:
• Ownership of individual, family, community health 
Sustainability of knowledge, efforts
Engagement Councils
• Vietnamese, Tacoma = Nov 5, 6 - 2010
• Ethiopian, Seattle – to be
scheduled