Strengthening Partnerships for Community Impact

Strengthening Partnerships for Community Impact
Komen Puget Sound Community Profile Report
2015

Overview
 Breast Health: Opportunities and Challenges
 Komen Puget Sound: Supporting Our Community
 Assessing our Needs: The 2015 Community Profile Report
 By the Numbers: Evaluating and Identifying High-Burden
Communities
 In Their Own Words: Understanding Barriers and Finding Solutions
 Amplifying Impact: Strengthening Health Systems
 Mission Action Plan: Paving the Way for Strategic Impact
2
Disclaimer: This is an unofficial presentation of Komen Puget Sound used for discussing the results of the 2015 Community Profile Report with partners.

Breast Health: Opportunities and
Challenges
3

4
Despite improvements in survival, breast cancer is the
second leading cause of cancer death for women in
the U.S.
4
Source

Breast cancer incidence rates have fallen across the
United States, but not everyone has benefited equally.
5
From 2007-2011,
breast cancer
incidence rates
remained stable
in white women
and increased by
0.3% per year in
black women.
Source

6
In 2015, more than 231,800 women and 2,350 men will
be diagnosed with invasive breast cancer in the U.S.
6
Source

7
Many factors can increase breast cancer risk.
7
Source

8
To save lives, interventions must combine patient
education and outreach with early detection and
treatment.
8
Without access to breast cancer early detection programs, many
women will forego screenings. A delayed diagnosis can mean that a
woman won’t seek care until her breast cancer has spread, making it
much deadlier and more costly to treat.
Source

Komen Puget Sound: Supporting Our
Community
9

Komen Puget Sound supports innovative, evidence-
based, culturally competent programs that improve
access across the breast health continuum of care.
10
Partnerships help us take action to
improve health equity, reducing
barriers that limit access to quality
breast health care and services.
Our partnerships focus on:
 scientific research
 education, outreach
 early detection
 patient navigation
 financial assistance
 treatment support
 survivorship support

11
Our partners work in communities across Puget
Sound, helping organize, empower and educate.
Over the past 22 years, Komen Puget Sound has invested more
than $29 million in local nonprofit, tribal and government
agencies that provide breast health and breast cancer services to
communities.
11

12
In our 2014 fiscal year, we granted $870,000 to seven
organizations and reached more than 13,000 low-
income and uninsured women with vital breast health
services.
12
Services provided
An additional
$390,000 was
donated for
scientific
research.

Assessing Our Needs: The 2015
Community Profile Report
13

The Community Profile Report is a comprehensive
assessment designed to help us prioritize the needs in
our community.
Methodology:
Quantitative and qualitative
assessment of breast health
resources and breast cancer
needs in our service area
Frequency:
Every four years
Purpose:
Guides our Affiliate in aligning
community outreach, grantmaking
and public policy activities
14
Communicates
state of breast
health in the
community.
Identifies
communities of
greatest need
Identifies
partners to assist
in addressing
barriers to care
and gaps in
services
Enables data-
driven decision
making about
how to best use
resources

15
We analyzed the information to understand what
prevents women from seeking help to screen for,
diagnose and treat breast cancer.
15
Quantitative analysis of breast cancer incidence and
mortality
Identification of communities with highest levels of
burden and/or disparity
Health systems and public policy assessment
Qualitative assessment of barriers and potential
solutions
Mission Action Plan to guide future decision making

By the Numbers: Evaluating and
Identifying High-Burden Communities
16

The rate of new cases of invasive breast cancer varies
by race, ethnicity, and geography.
17
Age Adjusted Rate Per 100,000 Women
PopulationGroup
Incidence rates of newly-diagnosed invasive
breast cancer by race and region
Within the Komen Puget Sound
service area, rates are higher in
the Greater Metro Area,
especially King County.
Rates of invasive breast cancer
are highest among AI/AN and
non-Hispanic white women.
The majority of cases among
black, A/PI, Hispanic and AI/AN
are in the Greater Metro Area.
SEER – National Cancer Institutes’ Surveillance, Epidemiology and End Results Program

Grays Harbor County has the highest proportion of
new cases of advanced stage breast cancer.
18
Data Not Available
Counties
36% or Greater
Less than 36%
Percentage of Advanced Stage at Diagnosis
Proportion of new breast cancer cases diagnosed at advanced stage, by county
The Greater Metropolitan Area carries a heavy burden due to the large number of people living in each country.

36% or Greater
Less than 36%
Race/Ethnicity
Percentage of Advanced Stage at Diagnosis
Pacific Islander
African American, Hispanic White and American
Indian/Alaskan Native individuals have the highest
proportions of breast cancers diagnosed at an
advanced stage.
19
Proportion of breast cancer cases diagnosed at advanced stage, by race and
ethnicity (# advanced stage cases)
Note: The Asia/Pacific Islander category combines the sub-groups: Chinese, Japanese, Filipino, Korean, Asian Indian/Pakistani, Vietnamese, and Pacific Islander. In addition, while Korean, Asian Indian, Pakistani, and
Pacific Islander had high proportions, the number of new cases was comparatively small. Additional information, including 5 year total number of advance stage cases, is available on request.
(112)
(46)
(240)
(30)
(194)
(49)
(407)
(75)
(5038)
(22)
(38)
(45)

Patients from Kitsap, Grays Harbor, Clallam and San
Juan counties are less likely to survive within five
years of being diagnosed with invasive breast cancer.
20County
Survival Less Than 90%
Survival 90% or Greater
Five-year survival rate after invasive breast cancer, by county (# deaths)
(37)
(24)
(124)
(370)
(17)
(20)
(10)
(170)
(62)
(57)
(20)
(32)
(6)

African American, American Indian/Alaska Native and
Pacific Islander patients are less likely to survive after
being diagnosed with invasive breast cancer.
21
Survival Less Than 90%
Survival 90% or Greater
Race/Ethnicity
Pacific Islander
Five-Year Cause-Specific Survival Rate
Five-year survival rate after invasive breast cancer, by race and ethnicity

Criteria were used to identify inequities;
communities with large populations or high
levels of racial and ethnic disparities were
prioritized.
Criteria
Annual number of new cases > 500 (counties only)
Proportion advanced stage BC > 36%
Total 5 year number of advanced stage cases > 500
5-year survival rate < 90%
Unlikely to meet HP2020 death rate target by 2020
Unlikely to meet HP2020 late stage rate target by 2020
22
Score
(50-75%)
(25-49%)
(0-24%)
Priority

23
Given high levels of disparity, we will target the Seattle
Greater Metropolitan Area and Grays Harbor County.
23
Five-Year survival < 90%
Proportion of advanced stage BC > 36%
Annual # of cases > 500
Total 5 year # of advanced stage > 500
Won’t meet HP2020 mortality goal
Won’t meet HP2020 late stage goal

24
In the Greater Seattle Metro Area and Grays Harbor
County, we will prioritize the AI/AN, African American,
Pacific Islander, Hispanic and non-Hispanic White
communities.
24
Five-Year Survival Below 90%Five-Year survival < 90%
Proportion of advanced stage BC > 36%
Annual # of cases > 500
Total 5 year # of advanced stage > 500
Won’t meet HP2020 mortality goal
Won’t meet HP2020 late stage goal

25
New data highlights the need to focus on hard-to-
reach communities with low access to breast health
services.
County 2011 2015 Racial/Ethnic Group 2011 2015
Lewis X Non-Hispanic White** X
Pacific X Black X X
Mason X American Indian/Alaskan Native X X
Grays Harbor X X Hispanic X X
King X X* Asian/Pacific Islander
Pierce X X* - Asian Indian/Pakistani X
Snohomish X X* - Vietnamese X
- Pacific Islander X X
25
*These 3 counties prioritized because of (1) high absolute numbers of new cases and advanced stage cases, and (2) the vast majority of the four racial/ethnic
groups shown to have high levels of disparity reside within these counties.
**More information on specific demographic characteristics of sub-groups (LGBTQ, rural, foreign born, low-income and medically underserved) may garner
insights on addressing breast health service access issues.
Changes in breast cancer disparities by county and racial/ethnic group

In Their Own Words: Understanding
Barriers and Finding Solutions
26

27Our diverse community
needs innovative
programs capable of
responding to patients
and eliminating barriers to
care.
In the Seattle Greater Metropolitan
Area (GMA), women encounter
barriers to access within the health
system and community:
 Limited health facilities and public
transportation for low-income residents
of rural and remote areas
 Limited or inaccurate information
among low-income, medically
underserved communities
 Providers and partners lack
sensitivity in regard to cultural taboos,
political factions and tensions within and
among racial and ethnic communities
 Low levels of awareness regarding
services offered by existing clinics,
hospitals and social service providers
27

28Grays Harbor County requires special attention. 28
Women in Grays Harbor County
encounter these problems:
 Lack of medical providers and
accessibility to services, combined
with lengthy internal processes
 High provider turnover rates pose
challenges to staff recruitment and
retention – and patient trust of the
health system
 Lack of understanding of the new
health care system under ACA
 Refusal of some providers to
accept Apple Health or health
plans with low reimbursement rates
 Lack of transportation resources
and gaps in the public transit service
 Discrimination at medical facilities,
particularly toward American
Indian/Alaska Native community
members
 Not enough language and
translation services for non-native
speakers

The qualitative data suggest we should consider a
range of approaches.
29
 Outreach to rural and eastern parts of
the county
 Leverage interest in collaboration
 Expand patient navigation models
 Engage with Russian speaking women
Pierce
 Outreach to rural and eastern parts of the county
 Education and awareness of services
 Work with African immigrants in community settings
 Encourage AI/AN use of covered services
 Address women’s fears concerning use of services
Sno-
homish
King
 Outreach to eastern and southern parts of the county
 Outreach to African immigrant, Russian, Ukrainian, LGBTQ and homeless
populations
 Learn more about non-Hispanic whites to better understand their
particular challenges
 Improve understanding of cultural tensions and political dynamics
“There is too much
division in the
community. We are not
taking care of our
neighbors anymore.”

30Strategies must be tailored to meet the needs of each
community.
30
Grays
Harbor
 Increase resources for
outreach and educational
efforts for each community
 Engage in peer-to-peer, word-
of-mouth awareness efforts at
churches, high school athletic
events and annual town festivals
 Improve access to educational
materials at the health
department, medical facilities and
libraries
 Forge new partnerships among
community organizations
 Improve transportation
resources
 Provide interpreters, especially
for Mexican dialects

The research points to
specific ways we can
help women in our
targeted counties.
 Prioritize self-care and
preventative health practices
 Forge new and creative
partnerships
 Increase culturally specific and
competent education, outreach
and patient navigation
 Increase transportation options
so that rural women can access
services
 Assist communities in using new
insurance for low-income
populations
 Conduct more research to obtain
insights about non-Hispanic
white women, especially those
who are foreign-born or speak
limited English
31

32
Partners know their communities and can
lead the way in developing new ideas.

33
African American women have a strong community of
advocates, yet face formidable challenges.
33
 Perceived
discrimination
when accessing
healthcare
 Denial: “It won’t
happen to me” or
“I don’t want to
know”
 Reluctance to
prioritize self-
care: “I’m too
busy taking care
of everybody else”
 Strong patient
self-advocacy;
strong community
and skilled outreach
workers
 Communal sense
of trust and
support, particularly
within faith-based
settings
 Strong
relationships,
connections and
new collaborations
Strengths Barriers

34African Immigrant women are willing to work with
other communities to improve access to services, but
misconceptions may hold them back.
34
 Fear of breast
cancer and
cancer treatment
 Lack knowledge
of preventative
health practices
 Misconceptions:
“mammograms
are very painful;”
“those who go to
the hospital, die”
 Grassroots
organizations
partner with others
to increase
awareness and
access to health
services
 Communal sense
of trust and
support within the
community and
particularly at faith-
based and cultural
events
Strengths Barriers

35The health care experiences of American Indian and
Alaska Native women vary by location and culture.
35
 Homelessness,
poverty and related
issues create a huge
burden
 Transitory nature of
population limits
patient tracking
 Limited access to
health care and
transportation
 Limited knowledge
of preventive health
practices
 Lack of awareness
of health care
resources
 Discrimination by
providers; high
turnover
 Health system
complexity; inability
to pay for care
 Dedicated tribal
communities reach
needy populations
 Older, established
nonprofits and
social service clubs
combine forces with
emerging
organizations
 Culturally
competent tribal
clinics with long-
time, trusted health
care workers
 Native elders who
are breast cancer
survivors serve as
advocates
Strengths Barriers

36The Hispanic community has made headway in
reducing breast health disparities, but there’s much
more work to be done.
36
 Many languages
within the Hispanic
community
 Lack of awareness
of free breast health
services
 Poverty, limited
transportation, and
multiple health and
social issues
 Migrant farm workers
have trouble
accessing follow-up
care
 Trust issues -
undocumented
immigrants worry
about deportation
 Organizations with
bilingual and
bicultural staff
promote breast
health education
and screening.
 Community is
receptive to
outreach and
welcomes services
 Women are
generally able to
access healthcare
system for clinical
services and family
planning
Strengths Barriers

37Pacific Islander women have strong support systems,
but cultural beliefs can limit their access to care.
37
 Cultural beliefs limit
women’s willingness
to seek care
 Lack of knowledge
of preventive health
practices, free breast
health resources and
financial assistance.
 Misconceptions and
fear around breast
health services
 Reluctance to
prioritize self-care
 Strong communal
trust and support
within family and
community
 Existing
community-based
organizations
 Pacific Islander
Health Board for
the region is in
initial planning
stages
Strengths Barriers
"I can’t get breast
cancer if I have no
family history."
“Talking about
breast cancer gives
it more power and
will make it
happen.”

38The LGBTQ community continues to lack optimal
health care for breast health services.
38
 Health system
policy barriers such
as “next of kin”
 Reluctance to
disclose gender or
sexual identity
 Mental health
issues hinder help-
seeking behaviors
 Lack of knowledge
of breast health
practices, services
 Some health
providers not
proficient in dealing
with LGBTQ
 Strong community
support (family of
choice)
 Well-established
grassroots
organizations with
broad reach
 Focus on survival
over appearance
 Potential to
strengthen LGBTQ-
specific cancer
support groups
Strengths Barriers
“When I see my chest all
I see is an absence of
cancer and that to me is
beautiful.”

39
All communities,
regardless of color,
gender or ethnicity,
have the right to
quality health care,
including breast
cancer services.

Amplifying Impact: Strengthening Health
Systems
40

41The Breast Cancer Continuum of Care helps guide
women’s experience with the health system.
41
Education plays key
role in both
providing
information to
empower and
encourage women
to get screened,
while reinforcing the
need for continued
follow-up.
Breast Cancer Continuum of Care (CoC)

42
Grays Harbor health care system services women
living in primarily rural areas.
42
Grays Harbor
County has
one of the
highest
provider-
patient ratios
(1:2000) in the
state. This is
five times
higher than the
standard of one
provider per
every 400
patients.
 Primarily rural with challenges to health access
(weather, transportation, fragmented care, need for
multiple providers following diagnosis)
 Low access to diagnostic procedures (Aberdeen
or Elma)
 Low access to breast surgery and reconstruction
(only Olympia)
 Limited access to both chemotherapy and
radiation services (Aberdeen or Olympia)
 Small number of support groups (Aberdeen)
 Limited financial support for breast cancer
patients
 Language barriers for Hispanic/Latina community
 High staff turn-over low provider capacity, long
wait times
 Limited access for tribal communities in the
northwest region

43The Greater Metropolitan Area health system is
stronger, but needs to reach more rural women.
43
 Most racially diverse, densely populated with increasing population and
highest count of people living in poverty
 Breast care services primarily available in Seattle
 Limited support groups for women of color
 Higher level of culturally-competent education and outreach
 Better access to financial assistance
 Limited knowledge of breast health resources among target populations
King
 Second most populated, diverse county; majority of services along I-5
 State-of-the-art breast center with innovative breast health services
General availability of support groups
 Availability of outreach, education and patient navigation for women of
color and sexual minorities
Pierce
 Third most populated county in Puget Sound; many services along I-5
 Eastern region is rural and less populated with limited transportation
 Limited access to screening mammograms
 Fragmented service availability
 Limited tribal reservation health access due to high transportation burden
 Established bilingual outreach, education and navigation programs
Sno-
homish

44The Breast and Cervical Cancer Early Detection
Program providers free screenings for low-income
women.
44
• In Puget Sound, BCCHP funds three regional organizations that
coordinate local health care providers and community-based
organizations to enroll and screen clients
• BCCHP provides a seamless continuum of care and covers cost of
treatment through Medicaid (Apple Health)
• Strong advocacy partners support of BCCHP continued role in
service provision
• Implementation of ACA means new insurance options, but BCCHP
continues to serve eligible clients who don’t qualify for Apple Health or
remain uninsured
• BCCHP primarily serves those clients that are above 138 percent and
up to 250 percent federal poverty level
• Many new clients are eligible to buy a health plan, but are unlikely to
do so due to high premiums and/or deductibles.
• BCCHP and related treatment program remain essential “safety net”
resources.

45The Affordable Care Act improves access to
insurance, but women who are hard to reach or not
eligible still need our help.
45
 Service fragmentation and lack of
transportation impact access to breast
health services in rural areas
 Cultural barriers, limited access to
undocumented populations, low cultural
competence of providers, and lack of
awareness regarding the ACA in key
communities
Greater
Metro
Area
 Limited provider capacity in high need,
rural areas
 Complex, rural economic context
impact on health provision
 Need more comprehensive
partnerships
Grays
Harbor
 Need for stronger breast health
partnerships
 Need for innovative solutions for
improving healthcare access
Common
Needs
“Women may
have access to
insurance, but
they need help
navigating the
system.”

46Health system challenges require strategic advocacy
to address barriers to care.
46
The newly insured need:
 Help understanding
how to access breast
health services
co-pays/deductibles
eligibility for BCCHP,
given ACA
 Decreased wait times
 Assistance finding
care providers willing
to accept their
insurance
Public
Policy
Impact

47Advocates should push for state and federal policies
that will ensure health care access for all.
47
 Continue to track ACA implementation and
assess gaps in breast health services
 Support insurance enrollment through Apple
Health and the WA Healthcare Exchange
 Increase the number of Apple Health providers
 Streamline eligibility processes to hasten
BCCHP enrollment
 Reach out and educate on the importance of
preventative health practices and screenings
 Affirm our commitment to health equity and
the elimination of breast health disparities
 Encourage coordinated, comprehensive service
delivery
Affiliate
Policy
Priorities

Mission Action Plan: Paving the Way for
Strategic Impact
48

The Mission Action Plan is the strategic plan for the
Affiliate’s mission activities for the next four years.
Together with partners, Komen Puget Sound will focus
on the communities of greatest need.
The Mission Action Plan will guide our education,
outreach, community organizing, partnerships,
grantmaking, and advocacy strategies.

GREATER SEATTLE METRO AREA
Improve access to breast health care for
native born and immigrant women in
need, and for low-income women in rural
areas. Also in the metro area, further
assessing the breast health needs of
specific low income subgroups.
GRAYS HARBOR COUNTY
Improve access to culturally competent
breast health services for rural,
American Indian/Alaskan Native and
Hispanic women
Increase health care system capacity to
provide quality breast health care.
Assess how our resources and grant
making priorities may need to adjust to
the Affordable Care Act.
Our mission for the
next four years:

The Challenge:
King, Pierce and Snohomish Counties carry a
disproportionate burden of advanced stage breast cancer
diagnoses and deaths, especially among African
Americans/Blacks, Hispanic/Latino, Pacific Islander and
American Indian/Alaska Natives, both native born and
immigrants.
51
Mission Action Plan
Greater Metropolitan Area

Mission Action Plan
Solution: Greater Metropolitan Area
 Strengthen existing partnerships and
develop new ones that focus on target
communities.
 Promote evidenced-based, culturally
competent programs to improve access.
 Include evidenced-based programs focused
on low-income rural women.
 Assess needs to determine focus service areas for
LGBTQ.
 Prioritize funding for LGBTQ evidence-based
programs.
 Identify service area focus for low income
subgroup(s) of non-Hispanic White women.
 Ensure evidenced-based programs for low income
subgroups of white women.
Response Strategies
 Improve access across the breast
health continuum of care for
women in the target populations.
 Increase access across the breast
health continuum of care for low-
income women in rural areas.
 Assess breast health needs of
low-income subgroup(s) of non-
Hispanic white women and
lesbian, gay, bisexual,
transgendered and
queer/questioning (LGBTQ)
community members

The Challenge:
Grays Harbor County has the highest proportion of new
cases of advanced stage breast cancer cases –
and one of the lowest five-year survival rates for invasive
breast cancer.
53
Mission Action Plan
Grays Harbor County

 Coordinate at least one health fair and
screening event targeting key
communities.
 Include evidence-based, culturally
competent programs targeting low-
income, rural AI/AN and Hispanic/Latina
women
 Collaborate with provider stakeholders
to address known service barriers
 Meet with Washington State legislators
to influence public funding and policy
for breast health/general health in
Grays Harbor County.
54
Response Strategies
 Improve access to culturally-
competent breast health
services for rural, Asian
Islander/Alaska Native and
Hispanic women.
 Increase health system
capacity to provide quality
breast health care.
Mission Action Plan
Solution: Grays Harbor County

The Challenge:
The impact of the Affordable Care Act on the provision of
breast health services across Washington State remains
unknown.
55
Mission Action Plan
The Affordable Care Act

 Monitor impact of the ACA on breast
health services and develop strategies
to respond to changes.
 Adjust priorities to align with changes
in the BCCHP, ACA and local breast
health needs.
 Enhance advocacy partnerships with
the American Cancer Society, Cancer
Action Network and national Susan G.
Komen.
56
Response Strategies
 Assess how priorities should be
adjusted in response to the
Affordable Care Act to best
leverage resources and
decrease breast health
disparities.
Mission Action Plan
Solution: the Affordable Care Act

Every day, Komen Puget Sound and its partners are
working to combat inequality while supporting women and
men to access lifesaving breast health care. Together we
can make change happen.

Strengthening Partnerships for Community Impact

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