Strengthening Partnerships for Community ImpactKomen Puget Sound Community Profile Report

2015

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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

Disclaimer: This is an unofficial presentation of Komen Puget Sound used for discussing the results of the 2015 Community Profile Report with partners.

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Breast Health: Opportunities and Challenges

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

4

Source

5Breast cancer incidence rates have fallen across the United States, but not everyone has benefited equally.

From 2007-2011,

breast cancer incidence

rates remained stable

in white women and

increased by 0.3% per year

in black women.

Source

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

6

Source

7Many factors can increase breast cancer risk.7

Source

8To save lives, interventions must combine patient education and outreach with early detection and treatment.

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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

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Komen Puget Sound: Supporting Our Community

Komen Puget Sound supports innovative, evidence-based, culturally competent programs that improve access across the breast health continuum of care.

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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

11Our 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.

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12In 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.

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Assessing Our Needs: The 2015 Community Profile Report

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

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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

15We analyzed the information to understand what prevents women from seeking help to screen for, diagnose and treat breast cancer.

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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

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By the Numbers: Evaluating and Identifying High-Burden Communities

The rate of new cases of invasive breast cancer varies by race, ethnicity, and geography.

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Age Adjusted Rate Per 100,000 Women

Popu

lati

on G

roup

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.

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Data Not Available

Coun

ties

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 GreaterLess than 36%

Race

/Eth

nici

ty

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.

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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.

20Co

unty

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.

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Survival Less Than 90%

Survival 90% or Greater

Race

/Eth

nici

ty

Pacific Islander

Five-Year Cause-Specific Survival Rate

Five-year survival rate after invasive breast cancer, by race and ethnicity

22

Criteria were used to identify inequities; communities with large populations or high levels of racial and ethnic disparities were prioritized.

CriteriaAnnual number of new cases > 500 (counties only)Proportion advanced stage BC > 36%Total 5 year number of advanced stage cases > 5005-year survival rate < 90%Unlikely to meet HP2020 death rate target by 2020Unlikely to meet HP2020 late stage rate target by 2020

Score(50-75%)(25-49%)(0-24%)

Priority

23Given high levels of disparity, we will target the Seattle Greater Metropolitan Area and Grays Harbor County.

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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

24In 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.

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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

25New data highlights the need to focus on hard-to-reach communities with low access to breast health services.

County 20112015 Racial/Ethnic Group 2011 2015Lewis X Non-Hispanic White**   XPacific X Black X X

Mason X  American Indian/Alaskan

Native X X

Grays Harbor X X Hispanic X XKing X X* Asian/Pacific Islander    

Pierce X X* - Asian Indian/Pakistani X 

Snohomish X X* - Vietnamese X  

- Pacific Islander X X

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*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

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In Their Own Words: Understanding Barriers and Finding Solutions

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

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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

29The qualitative data suggest we should consider a range of approaches.

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-homis

h

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 Harbo

r

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

31The 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

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

33African American women have a strong community of advocates, yet face formidable challenges.

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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.

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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.

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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.

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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.

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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.

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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.”

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

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Amplifying Impact: Strengthening Health Systems

41The Breast Cancer Continuum of Care helps guide women’s experience with the health system.

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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)

4242

Grays Harbor health care system services women living in primarily rural areas.

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-homis

h

44The Breast and Cervical Cancer Early Detection Program providers free screenings for low-income women.

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• 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

GreaterMetro 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.

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The newly insured need:

Help understanding how to access breast health services

Help understanding co-pays/deductibles

Help understanding 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.

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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

48

Mission Action Plan: Paving the Way for Strategic Impact

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:

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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.

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

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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.

Mission Action PlanGrays Harbor County

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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.

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

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

Mission Action PlanThe Affordable Care Act

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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.

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.