COMMUNITY PROFILE REPORT ©2011 Northeast Ohio Affiliate of Susan G. Komen for the Cure®

2011

Disclaimer

The information in this Community Profile Report is based on the work of the Northeast Ohio Affiliate of Susan G. Komen for the Cure® in conjunction with key community partners. The findings of the report are based on a needs assessment public health model but are not necessarily scientific and are provided "as is" for general information only and without warranties of any kind. Susan G. Komen for the Cure and its Affiliates do not recommend, endorse or make any warranties or representations of any kind with regard to the accuracy, completeness, timeliness, quality, efficacy or non-infringement of any of the programs, projects, materials, products or other information included or the companies or organizations referred to in the report.

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Acknowledgements The Northeast Ohio Affiliate of Susan G. Komen for the Cure would like to extend a sincere thank you to the community members and organizations that assisted us with our efforts. Komen Northeast Ohio Community Profile Team Members Jennifer Boland Cleveland Clinic Innovation Center Komen Board Member Gabrielle Brett Case Comprehensive Cancer Center Cancer Outreach Specialist Gina Chicotel Komen Northeast Ohio Mission Coordinator Carrie Clark Komen Northeast Ohio

Karen Ishler, Ph.D. Candidate Case Western Reserve University Data/Statistics Expert Ami Peacock, MSW MetroHealth Hospital Program Coordinator Janet Sharpe Trinity Health System Breast and Cervical Cancer Program

Programs Director Quantitative Data Consultants - Prevention Research Center for Healthy Neighborhoods, Case Western Reserve University Elaine Borawski, Ph.D. Erika Trapl, Ph.D. Executive Director Associate Director Katie Rabovsky Data Technician PhotoVoice ConsultantsLena Grafton, MPH, CHES St. Vincent Charity Medical Center Community Outreach Director

Meia Jones Center for Reducing Health Disparities Research Coordinator/Photographer

Qualitative Data Consultants – Compass Consulting Services, LLC Tameka Taylor, Ph.D. Partner & Consultant While we cannot name each person who contributed to this process, we would like to thank all of the community members, survivors, and healthcare professionals who recruited individuals and groups to participate in the surveys, focus groups, and all other aspects of the data collection and assessment process.

Table of Contents Executive Summary ...................................................................................................... 6

Introduction .................................................................................................................. 6 Statistics and Demographic Review ............................................................................ 6 Health Systems Analysis ............................................................................................. 7 Qualitative Data Overview ........................................................................................... 9 Conclusions ............................................................................................................... 10

Introduction ................................................................................................................. 11 Affiliate History ........................................................................................................... 11 Organizational Structure ............................................................................................ 12 Description of Service Area ....................................................................................... 13 Purpose of the Report ................................................................................................ 14

Breast Cancer Impact in Affiliate Service Area ........................................................ 15 Methodology .............................................................................................................. 15 Communities of Interest ............................................................................................. 16 Conclusions ............................................................................................................... 19

Health Systems Analysis of Target Communities .................................................... 20 Overview of Continuum of Care ................................................................................. 20 Methodology .............................................................................................................. 20 Overview of Community Assets ................................................................................. 21 Public Policy Perspectives.………………………………………………………………...24 Conclusions ............................................................................................................... 25

Breast Cancer Perspectives in the Target ................................................................ 26 Methodology .............................................................................................................. 26 Review of Qualitative Findings .................................................................................. 27 Conclusions ............................................................................................................... 31

Conclusions and Affiliate Action Plan ....................................................................... 32 Putting the Data Together .......................................................................................... 32 Selecting Affiliate Priorities ........................................................................................ 32 Affiliate Action Plan .................................................................................................... 33

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List of Figures Figure 1. Komen Northeast Ohio Affiliate staff organizational structure……………..12 Figure 2. Map of Komen Northeast Ohio service area…………………………………13 Figure 3. Komen Northeast Ohio relative need by county……………………………..17 Figure 4. Cuyahoga County relative statistical need…………………………………...18 Figure 5. The continuum of care………………………………………………………….20 Figure 6. Cuyahoga County programs and services asset map………………………22

List of Tables

Table 1. Regional average values and ranges for selected statistics…………………....16 Table 2. Comparable average values and ranges for incidence and mortality rates…..16 Table 3. 2011 Komen Northeast Ohio communities of interest…………………………..18 Table 4. Communities of interest health systems analysis…..……………………………22

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Executive Summary Introduction Nancy G. Brinker promised her dying sister, Susan G. Komen, she would do everything in her power to end breast cancer forever. In 1982, that promise became Susan G. Komen for the Cure®, the world’s largest breast cancer organization and the largest source of non-profit funds dedicated to the fight against breast cancer with more than $1.9 billion invested to date. The Northeast Ohio Affiliate of Susan G. Komen for the Cure was initiated in 1994 and raised $150,000 through its first Race for the Cure®. In 2010, the Northeast Ohio Affiliate raised more than $2.4 million and granted nearly $1.5 million to 24 organizations, impacting nearly 46,000 people. The Northeast Ohio Affiliate was also named Affiliate of the Year by Komen National in 2010. The Affiliate service area covers 22 highly diverse counties across Northeast Ohio. The largest urban area is the city of Cleveland in Cuyahoga County. In addition to other major cities (Lorain and Elyria in Lorain County, Youngstown in Mahoning County, Akron in Summit County, Canton in Stark County, and Mansfield in Richland County), the Affiliate serves a large rural population. Half of the counties within the service area are part of Appalachia, and Millersburg, OH, located in Holmes County, is home to the world’s largest Amish settlement. A vital first step in fulfilling our promise to end breast cancer forever is to understand the state of breast health in our service area. The Komen Community Profile is a community needs assessment conducted every two years that assists the Affiliate in identifying needs related to breast health and cancer education, screening, treatment and survivorship. The Community Profile includes an overview of demographic and breast cancer statistics that highlight target areas, groups or issues. This data helps identify regions, communities and populations where our efforts are most needed. To ensure these efforts are effective and non-duplicative, an inventory of programs and services is also conducted. A more in-depth analysis within communities of interest provides further insight into the statistics. Statistics and Demographic Review Data provided by Thompson Reuters was reviewed by the Community Profile Team and led by key staff at the Prevention Research Center for Health Neighborhoods at Case Western Reserve University in Cleveland. This data was collected from multiple sources including: insurance estimates, the Claritas Demographics, the National Health Interview Survey (NHIS), the Surveillance, Epidemiology, and End Results (SEER) Database, and information collected from the US Census Bureau. Because of the immense differences throughout the region, data was broken down to the county level, and further to a zip code level where the data allowed. The Community

Profile team looked at the following seven categories to determine areas “in need”: high percentage of women over the age of 40, high percentage of non-white females, high percentage of uninsured females ages 18-64, high percentage of females age 40 and older with no mammogram in the past year, a high incidence rate, a high percentage of late stage diagnosis (Stages 2-3-4), and a high mortality rate. The following counties were selected as communities of interest based on their high rates in all seven categories when compared with every county in the service area. Counties/Communities of Interest

County Female Population 40+

% Non-white

% Uninsured Females 18-64

% Females 40+ with no Mammography in Last 12 Months

Incidence in Female Population per 100K

% Late-Stage Diagnosis (2-3-4)

Mortality in Female Population per 100k

Cuyahoga 354,500 37.1 18.6 36 135.9 36.5 32.21 Lorain 76,556 18.9 12.4 35.7 122.73 35.2 29.00 Mahoning 67,633 22.3 19.2 37 106.41 35 34.92 Richland 32,389 12.9 14.7 38.3 138.17 34.7 31.84 Harrison/Jefferson/ Belmont 43,946 6.4 20.4 40.0 144.81 34.1 37.60

22 County Average

19.1 15.2 36.6 119.58 35.4 29.77 US Average

118.69 35.8 23.61

Ohio Average

116.2 35.5 27.87

Table 1. 2011 Komen Northeast Ohio communities of interest. Thomson Reuters ©2009 Each community of interest has a unique grouping of characteristics that place it higher than others on the list of potential need. Cuyahoga County was selected for its high rates in nearly all seven categories across the board, but specifically for its high rates of uninsured (18.6%), late-stage diagnosis (36.5%) and mortality (32.2/100k women). Lorain County was chosen for its high rates of incidence (122.7), mortality (29.0) and, in particular, low screening rates for women over 40 (35.7%). Mahoning County was selected for its relatively low rate of incidence (106.4) coupled with an above average mortality rate (34.9), as well as a high non-white population (22.3%) and uninsured women (19.2%). Richland County was picked for high rates of incidence (138.2) and mortality (31.84). The combination community of Harrison/Jefferson/Belmont was chosen for its unique combination of high incidence rates (144.8) and mortality (37.6). It is important to note that within the larger counties, as in Cuyahoga County, there are diverse sub-sections that need to be treated differently. Therefore, within each community of interest, information was broken down to the zip-code level to determine specific “hotspot” areas, or areas in need of further investigation.

Health Systems Analysis The continuum of care (see Figure1) provides the framework for the analysis in this section and highlights the many factors within the healthcare system influencing the statistics in our communities of interest. An inventory of programs and services was conducted on screening and treatment facilities, education and outreach programs, and survivor support programs within Northeast Ohio. Data from the Ohio Department of Health, the Affiliate’s grantee network, the Ohio Hospital Association and a variety of internet sources was also utilized. The physical location of these resources was then plotted on an asset map to further illustrate the needs in the communities of interest.

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Figure 1. The continuum of care. Overall, nearly 600 organizations are currently providing breast health services in Northeast Ohio. This includes 246 screening services, 92 treatment facilities, 104 education and outreach programs, and 176 survivor programs. Cuyahoga County has the greatest concentration of resources, followed by Harrison/Jefferson/Belmont, Mahoning, and Lorain Counties. Richland County had the least amount of services available to residents. It is important to note, however, that taken on their own the counties of Harrison, Jefferson, and Belmont have the least amount of services available to their residents. The Ohio Breast and Cervical Cancer Project (BCCP) is a state-wide, high-quality breast and cervical cancer program offered at no cost to eligible women. Each county in the Affiliate service area is supported by a regional BCCP office. The program is funded by the Center for Disease Control and Prevention (CDC) with supplemental funding provided by the state. Eligible women who are diagnosed with breast cancer through this program qualify for BCCP Medicaid, which covers all costs of treatment. The Northeast Ohio Affiliate has a strong working relationship with the Ohio BCCP program. However, with the recent national and state budget crisis, the program’s ability to screen eligible women, and its future stability, is in jeopardy. To gather more information, survivors, healthcare providers and community leaders in the communities of interest completed 319 online surveys. The respondents answered questions related to access, quality of care, and personal opinions of the current healthcare system. 15 key informant interviews were completed with select survey respondents. This data indicated that the populations least likely to get mammograms were under/uninsured (85.1%), those living in poverty (87.2%), and those with low literacy rates (65.2%). Minority populations (46.8%) and populations with other health problems (37.8%) were also identified. 81.3% of those not accessing screening services were reported to have a combination of all those factors.

Cancer not diagnosed

Abnormal

Breast cancer diagnosis

Normal

Major areas where women fall out of the continuum of care were also identified. There is a strong need for more culturally competent evidence-based education and awareness programs specifically targeted to priority populations (under/uninsured, minority women). Provider education related to the BCCP and screening guidelines were also indicated. The main area of concern identified was the need for financial assistance programs related to mammography screening services. Qualitative Data Overview Exploratory data was collected via surveys, key informant interviews and focus groups. 319 online surveys were completed by three targeted groups in the identified communities of interest: survivors, healthcare providers and community leaders. 15 key informant interviews were conducted over the phone with select provider survey respondents to gather more detailed information related to their answers. One survivor focus group was conducted in Cuyahoga County and included eight Latina women. Because a survivor focus group could not be conducted in Richland County, one was completed in neighboring Ashland County and included 14 Caucasian women, some of whom were from Richland. A provider focus group was completed in Jefferson County with eight healthcare professionals. A PhotoVoice (PV) project, including four under/uninsured African American women and two Latina women, was also completed in Cuyahoga County. Several key themes emerged during the data collection process and reinforced the findings from the previous two sections. First is the need for more education and awareness around breast cancer and screenings to break down barriers to care related to fear or not knowing about screening recommendations. Second is the need for more education, awareness, services and support for younger women so they can begin looking for breast cancer sooner, thus increasing their chances of survival. And finally, as reported earlier, financial assistance programs are a major concern for many of the participants, including advocacy efforts for insurance during treatment, financial assistance for screening, transportation, childcare, gas money, and prosthesis.

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Conclusions A review of demographic and breast cancer data, programs and services, and information collected from target populations in priority communities revealed many populations and areas adversely affected by breast cancer. Based on this data, the following priorities and objectives were created as the action plan to address the disparities related to breast cancer in the Northeast Ohio service area. Priority 1: Systemic Issues - Develop and strengthen relationships with stakeholders and non-traditional partners along the continuum of care to increase access and reduce systemic barriers. Priority 2: Education/Awareness - Increase breast health awareness and education programs, including early detection and screening information, for women most in need of services, with a focus on minority populations.

Priority 3: Access – Increase access to screening and treatment services for the low-income, under/uninsured, working poor and minority populations.

Introduction Affiliate History Nancy G. Brinker promised her dying sister, Susan G. Komen, she would do everything in her power to end breast cancer forever. In 1982, that promise became Susan G. Komen for the Cure®, the world’s largest breast cancer organization and the largest source of nonprofit funds dedicated to the fight against breast cancer. To date, Komen for the Cure has invested more than $1.9 billion towards the promise. Komen is the world’s largest grassroots network of survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures. The Northeast Ohio Affiliate was initiated in 1994 by the Junior League of Cleveland as part of its Breast Health Task Force. The Junior League conducted the first Race for the Cure® in Cleveland, Ohio, that same year. With more than 3,000 participants, this volunteer led Race raised $150,000 and all dollars were granted to the American Cancer Society for their Breast Education and Screening Together (BEST) program. From 1996 to 1998, the Race for the Cure and the Affiliate were separate organizations working together. In 1999, Komen National restructured the Affiliate network and required all Affiliates to become incorporated at the state level and all Race activities to become a dedicated program of the Affiliate. In Ohio, two chapters of Komen, the Cleveland Chapter and the Central Ohio Chapter, joined forces and became the Northeast Ohio Affiliate. The Junior League stepped down as Race organizers and a temporary employee was recruited to help with the Race, eventually becoming the Administrative Director for the Affiliate. Headquarters for the Affiliate were moved to Cleveland. In 2003, the Administrative Director was promoted to Executive Director. A new Affiliate Board began a focused recruitment process resulting in five additional Board members with diverse backgrounds and no previous association with the Race or the Affiliate. Working committees were created and a strategic plan was implemented to guide the work of the Affiliate, focusing on Komen’s mission and fundraising. In 2004, the community grants program reached $650,000 invested in the community thanks to Board leadership on the Fund Development Committee. In 2005, the Affiliate sponsored two major events and new Board members were brought on with backgrounds as varied as public relations, human resources, social work, nursing, business and accounting. Current Executive Director Sophie Sureau joined the Komen team in 2005. In 2006, additional staff was hired and a reorganization project was begun by the Board in an effort to improve communication, better utilize volunteers and integrate the Race into all aspects of the Affiliate’s work. Revenue increased and exceeded $2 million, with grant distribution topping the $1 million mark. Much of this success was attributable to having staff and Board members in place to coordinate all Affiliate initiated programs

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and activities. In 2007 more staff positions were created, bringing the number of employees at the Affiliate to seven. In 2010, Komen Northeast Ohio was named Affiliate of the Year out of 125 Affiliates worldwide by Komen National. The Affiliate raised $2.4 million and provided nearly $1.5 million to communities and individuals touched by breast cancer in Northeast Ohio, impacting nearly 46,000 people. Komen Northeast Ohio has established themselves as a leader in the breast health community, working diligently in areas such as education, outreach and advocacy. Recently, the Affiliate made significant strides in the public policy arena, partnering with legislators to increase funding for the state’s Breast and Cervical Cancer Program. Planning is also underway for a signature event in the Akron/Canton area to help increase Komen’s presence in the community. Organizational Structure The Affiliate was restructured in 2008 to include additional levels of management. The Executive Director works with the Board President and two managers, the Programs Director and the Development & Marketing Director, to oversee the Affiliate’s work. The Programs Director is responsible for all mission-related work and directly supervises the Mission Coordinator and the Mission Intern. The Development & Marketing Director, responsible for all fund development, oversees the work of the Marketing Coordinator, the Volunteer & Events Coordinator, and the Marketing Intern to develop effective fundraising, marketing, and volunteer management-related programs. The Office Administrator reports directly to the Executive Director and is responsible for managing the financial and operational components of the Affiliate (See Figure 1). The Affiliate also operates with a 13 member Board of Directors, a Corporate Advisory Council, and multiple working volunteer committees.

Figure 1. Komen Northeast Ohio Affiliate staff organizational structure.

Description of Service Area In 2009, Komen Northeast Ohio expanded its service area and increased the number of counties served from 15 to 22. The decision to expand the service area was based on a state-wide review of services and program coverage. The survey was completed by the four Ohio Affiliates – Northeast Ohio, Northwest Ohio, Columbus and Cincinnati. This expansion project now allows every county in Ohio the opportunity to receive funding from Komen. The Northeast Ohio service area is highly diverse and contains several major cities and many small rural towns (see Figure 2). The largest urban area is the city of Cleveland in Cuyahoga County, followed by the city of Youngstown in Mahoning County, the cities of Lorain and Elyria in Lorain County, the city of Akron in Summit County, the city of Canton in Stark County, and the city of Mansfield in Richland County.

Figure 2. Map of Komen Northeast Ohio service area. In addition to the large, highly populated cities, the Affiliate serves a large rural population, particularly in the southern most counties. Eleven of these counties (Ashtabula, Belmont, Carroll, Columbiana, Coshocton, Harrison, Holmes, Jefferson, Mahoning, Trumbull and Tuscarawas) are considered Appalachia and many counties house Amish and Mennonite populations. Millersburg, Ohio, located in Holmes County, is home to the world’s largest Amish settlement.

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Purpose of Report A vital first step in fulfilling our promise to end breast cancer forever is to understand the state of breast health in our own backyard. Every two years, Komen Northeast Ohio is mandated by our National office to conduct a needs assessment at the local level. The resulting report, The Komen Northeast Ohio Community Profile, assesses the current conditions of breast health and breast cancer in the Affiliate service area. More specifically, the Community Profile identifies the needs in our service area related to breast health and cancer education, screening, treatment and survivorship. The Community Profile includes an overview of demographic and breast cancer statistics highlighting target areas, groups and issues. This data helps the Affiliate identify regions, communities and populations most in need of breast health services. The report also evaluates the current programs and services in these areas to identify existing service assets and areas of concern. Once breast health needs and gaps are identified, they are broken down by qualitative data to determine whether the needs in communities can be filled through the Affiliate’s efforts in educational programming, grant making, partnerships, and public policy efforts or through a combination of several of these tactics. The data collection process helps shed light on why the statistics are what they are. Targeted priorities and strategic objectives on how to help bridge the identified gaps in breast health services are reported in the Community Profile. These priorities help determine the focus of the Affiliate’s strategic planning and grant making efforts and drive the overall work of the Affiliate. The report strives to make sure local programs supported by Komen target the people and areas most in need and ensures they are non-duplicative. Finally, a quality Community Profile allows the organization to:

• Identify ways to fill gaps through partnerships and additional granting opportunities

• Establish focused education and outreach efforts to address the community need • Drive public policy efforts • Establish marketing and communication direction • Increase inclusion efforts in the breast cancer community

Breast Cancer Impact in Affiliate Service Area Methodology To examine the many patterns and unique characteristics of the communities within the Northeast Ohio Affiliate service area, several different forms of data were utilized. The primary source of data came from Thomson Reuters, who created specialty data packs for all the Komen Affiliates. The data included is a collection of many sources including: insurance estimates, the Claritas Demographics, the National Health Interview Survey (NHIS), the Surveillance, Epidemiology, and End Results (SEER) Database and information collected from the US Census Bureau. Local data from the 2008 county profiles created by the Ohio Department of Health, as part of the Ohio Cancer Incidence Surveillance System, and information shared from Hospice of the Western Reserve were also used to examine breast cancer’s local impact. The Thompson Reuters data was chosen as the primary data source due to the stability of utilizing data that has been modeled under nationally refined methods for zip code level information. This collection of data provides information on breast cancer incidence, prevalence, mortality, screening rates, stage of the cancer when diagnosed, and demographic information, including population size and make-up, insurance levels, and household incomes. Each of these factors was deemed an important indicator and chosen to contribute to the Community Profile Team definition of “in need.” The Thompson Reuters statistics were used to create maps that graphically show the data over the geographical area covered by the Affiliate. Additionally, the maps demonstrate “hotspots”, or areas to target for further investigation. The maps combine numerical data with geographic regions and the physical locations of assets to create a more complete picture of the impact breast cancer has on the service area. Key staff members from The Prevention Research Center (PRC) at Case Western Reserve University were the lead consultants of this analysis. Overview of the Affiliate Service Area With a service area covering 22 counties, Komen Northeast Ohio has a great challenge to address the demographic differences across the region. When covering this much physical area, no single statistic or stereotype can adequately describe the entire population or their individual needs. Because of these differences, data was broken down from the Affiliate level to the county level, and further to a zip code level where the data allowed. Table 1 below shows the region’s average in several categories, as well as the range of the highest and lowest values found in the region.

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Statistic Komen Northeast Ohio Average

Highest Value Lowest Value

Incidence (per 100k females)

119.58 153.81 (Belmont) 84.02 (Holmes)

Mortality (per 100k females)

29.77 42.36 (Harrison) 22.40 (Ashland)

% of Population with no Mammogram in the last 12 months

36.6% 41.3% (Holmes) 32.5% (Geauga)

Table 1. Regional average values and ranges for selected statistics. Thomson Reuters ©2009 Table 2 below depicts the startling averages for the entire region, which are higher than both State and National averages for incidence and mortality rates. Statistic National Average State Average Komen Northeast

Ohio Average Incidence (per 100k females)

118.69 116.2 119.58

Mortality (per 100k females)

23.61 27.87 29.77

Table 2. Comparable average values and ranges for incidence and mortality rates. Thomson Reuters ©2009 And still more alarming, nationally the state of Ohio ranks 32nd in overall breast cancer incidence and 4th in overall mortality. Thomson Reuters’s data for breast cancer screening rates in Northeast Ohio were fairly consistent throughout the service area, as the 2009 regional average of 36.6% of women age 40 and older without a mammogram in the last 12 months was almost identical to the 2007 value of 36.3%. However, the stable rate of screening is not necessarily a good thing, as over one third of the women in Northeast Ohio are still not being screened, which can have devastating consequences for our community. Communities of Interest There are many different ways to look at the Komen Northeast Ohio service area and interpret the need found throughout the communities. The data was separated to create a definition for “need.” Using any one statistic as the determining factor of need could potentially exclude regions, groups or populations. Therefore, seven key categories were selected to statistically define need. Communities were subsequently identified according to this definition and were then determined to be “communities of interest” for further study. Knowing that the most significant risk factors for developing breast cancer are being female and age, the un-age adjusted rates for incidence and mortality in only the female

populations of the service area was a good place to start. This was done because a county with a larger number of older women is more likely to have more cases of breast cancer, and thus needs more help in fighting the disease. Late stage diagnosis (defined for this report’s purposes as having been diagnosed with breast cancer in stages two-four) was also a factor in the definition of need, as it is a statistical fact that the earlier a case of breast cancer is caught, the better the chances of survival and the easier it can be to treat. Next, mammography screening levels were examined per county as mammography has been found to be a major asset in detecting breast cancer at an early stage. Women who have yearly mammography screenings after age 40 find cancers earlier, allowing for more options and more time for treatment. Other factors examined were levels of un-insurance and the percent of the population that were non-white. Each of these factors contributes to a higher risk of a woman not having full access to medical screenings or needed treatments. Finally, total population was considered, as areas with higher populations may need more assistance to reduce an equally poor rate of any particular statistic than would a county with a smaller population. All seven categories used in this analysis were considered equally and counties were ranked based on their score against other counties within each category. While the above categories are not the only determinants of need, these risk factors create a good starting point from which to examine smaller regions, or communities of interest, and to start asking more detailed questions.

Figure 3. Komen Northeast Ohio relative need by county. Thomson Reuters ©2009

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The five communities of interest were selected based on their calculated value of relative need, as well as their diverse individual characteristics that can serve as a model for similar counties that were not selected (See Table 3). Three counties of interest, Belmont, Harrison and Jefferson, are geographically, demographically and statistically similar to one another and have been grouped into one area for the purpose of creating a community of interest. Counties/Communities of Interest

County Female Population 40+

% Non-white

% Uninsured Females 18-64

% Females 40+ with no Mammography in Last 12 Months

Incidence in Female Population per 100K

% Late-Stage Diagnosis (2-3-4)

Mortality in Female Population per 100k

Cuyahoga 354,500 37.1 18.6 36 135.9 36.5 32.21 Lorain 76,556 18.9 12.4 35.7 122.73 35.2 29.00 Mahoning 67,633 22.3 19.2 37 106.41 35 34.92 Richland 32,389 12.9 14.7 38.3 138.17 34.7 31.84 Harrison/Jefferson/ Belmont 43,946 6.4 20.4 40.0 144.81 34.1 37.60

22 County Average

19.1 15.2 36.6 119.58 35.4 29.77 US Average

118.69 35.8 23.61

Ohio Average

116.2 35.5 27.87

Table 3. 2011 Komen Northeast Ohio communities of interest. Thomson Reuters ©2009 Each of the communities listed in Table 3 has distinct demographics that have placed them on the communities of interest list. It is important to note that within the larger counties, particularly Cuyahoga County, there are diverse sub-sections that should be treated differently. Therefore within each community of interest, information was broken down further to the zip code level to determine specific areas most in need. An example of this breakdown can be seen below in Figure 4, which shows how some zip codes are in much greater relative need than others. Determining exactly what those potential needs are and ways Komen can help bridge gaps in the continuum of care are investigated further in the next sections of the report.

Figure 4. Cuyahoga County relative statistical need. Thomson Reuters ©2009

Conclusions Each community of interest has a unique grouping of characteristics that place it higher on the list of potential need. All seven categories used to determine need were considered equally and counties were ranked based on their score against other counties within each category. Below are some, but not all, of the specific reasons each area was chosen as a target community. Cuyahoga County was selected due to its high rates in nearly all seven categories across the board. Cuyahoga County contains the city of Cleveland and has the largest and most diverse population, as well as some of the highest rates of un-insurance (18.6%), late stage diagnosis (36.5%) and mortality (32.2/100k females). Also of interest in this county is the selection of healthcare options. As with most areas surrounding larger metropolitan cities, there are several hospitals and healthcare systems centrally located in the community. However, the availability and rates of access to these numerous facilities in the county makes this region one of particular interest. Lorain County was chosen for its high rates of incidence (122.7), mortality (29.0) and, specifically, low screening rates in women over 40 (35.7%). However, a low rate of uninsured women ages 18-64 (12.4%) creates a demographic of women different from Cuyahoga County. Women in Lorain County are more likely to be experiencing alternate barriers to screening or care beyond the common problem of lack of insurance coverage. Mahoning County was selected for the low incidence rate (106.4) measured for the county in combination with an above average mortality rate (34.9), as well as a high population of non-white residents (22.3%) and uninsured women aged 18-64 (19.2%). Richland County, on the other hand, was picked for high rates of incidence (138.2) and mortality (31.84). Slightly lower rates of late stage diagnosis (34.7%) coupled with low un-insurance rates for women ages 18-64 (14.7%) and a small percentage of minority women (9%) separates Richland County from the other target communities. The combination community of Harrison, Jefferson and Belmont was chosen for its unique combination of high rates of incidence (144.8) and mortality (37.6). The older population and the rural community aspects at play in this area make the region very different than some of the other communities chosen with larger populations and more urban demographics. It should be noted again that within each of these communities are specific geographical and ideological reasons explaining why the statistics reported are what they are. Further investigation is required to determine the root causes and potential solutions to the unique situations found throughout Northeast Ohio.

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Health Systems Analysis: Programs and Services Assessment Overview of Continuum of Care An important component in identifying the gaps, barriers and issues present for women in each phase of their cancer journey is the continuum of care (see Figure 5). The continuum of care provides the framework for a deeper analysis of resources because many factors within the healthcare system influence the data highlighted in our communities of interest. An analysis of the resources along the continuum of care can provide a more detailed understanding of these statistics.

Figure 5. The continuum of care model. Data Source and Methodology An inventory of programs and services in all of Komen Northeast Ohio’s 22 counties was collected on a number of key resources providing screening and treatment services, education and outreach programs, and survivor support programs. The Mission Coordinator, Mission Intern, and multiple volunteers from the Komen Northeast Ohio Education Committee conducted internet searches and utilized data from the Ohio Department of Health, the Affiliate’s grantee network, and the Ohio Hospital Association. The resources were plotted on asset maps to illustrate the services (or lack thereof) available, completed by the PRC. Planning is under way to develop an education and resource tool-kit for public distribution. The Public Policy Perspective was provided by the Affiliate Programs Director. To further understand how women navigate through the continuum of care, exploratory data was collected through surveys and key informant interviews. Survivors, healthcare providers, and community leaders were targeted for input. Three separate surveys were designed with each specific audience in mind. Survey Monkey, an online survey provider, was the instrument to disperse the surveys and collect the results. A convenience sample from Komen Northeast Ohio’s survivor database and the Komen grantee network was utilized for the survey disbursement.

Cancer not diagnosed

Abnormal

Breast cancer diagnosis

Normal

The survivor survey consisted of 45 multiple-choice, closed and open-ended questions to assist in gaining a perspective on the survivor’s experiences in the breast health system. The survey link was emailed to survivor addresses in the Affiliate’s database as well as to provider and grantee addresses. The healthcare provider survey consisted of 33 multiple-choice, closed and open-ended questions. Surveys targeting community leaders consisted of 26 multiple-choice and closed and open-ended questions. Key informant interviews, consisting of 21 open-ended questions, were conducted over the phone by Community Profile Team members with select survey respondents to gather more details. This information was coded and summarized by the Affiliate’s Mission Intern. Programs and Services Overview The 22 counties of Komen Northeast Ohio are very diverse, comprising multiple urban centers and large rural areas. The variety and number of services varies from county to county, with large numbers in urban centers and limited options in rural areas. There are approximately 600 entities offering breast health services in Northeast Ohio. This count includes 246 screening services, 92 treatment facilities, 104 education and outreach programs, and 176 survivor support services. Cuyahoga County, which encompasses the city of Cleveland, has the greatest concentration of services (see Figure 6) and all 22 counties have at least one breast health service provider. However, Carroll and Geauga Counties have no reported survivor support programs, and Coshocton County has no reported education/outreach programs or survivor support programs. Holmes County is the most concerning, with only two locations for screening services and no known education/outreach, treatment, or survivor support services. The five communities of interest vary greatly in the amount of services offered to residents (see Table 4). Cuyahoga County, once again, has the greatest concentration of services, followed by Harrison/Jefferson/Belmont, Mahoning, and Lorain Counties. Richland County had the least amount of services available to residents. It is important to note, however, that taken on their own the counties of Harrison, Jefferson, and Belmont have the least amount of services available to their residents.

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Figure 6. Cuyahoga County programs and services asset map. Thomson Reuters ©2009 Counties/Communities of Interest Health Systems Analysis

Table 4. Communities of interest health systems analysis. Many counties in the service area are home to medical clinics belonging to the University Hospitals and/or Cleveland Clinic network of providers, the two largest healthcare systems in Northeast Ohio. The Cleveland Clinic Taussig Cancer Center, located near downtown Cleveland in Cuyahoga County, was named the ninth best hospital in the nation for the treatment of cancer in 2010 by U.S. News. The service area is also home to one of two National Cancer Institute (NCI) certified comprehensive cancer centers in Ohio (the Case Comprehensive Cancer Center, located in Cleveland) and a comprehensive breast cancer center is in development in the Youngstown area. 23 Federally Qualified Healthcare Centers fall within nine of the 22 counties.

County Hospitals/ Healthcare Systems Screening Services Treatment Services Education/Outreach

Survivor Support Services

Cuyahoga 23 84 24 43 94 Lorain 4 25 4 4 4 Mahoning 5 17 7 4 3 Richland 3 6 4 4 6 Harrison/Jefferson/ Belmont 11 18 8 12 11

While a variety of services are available in every county, the accessibility and quality of care varies from provider to provider. Figure 6 demonstrates this: Cuyahoga County has numerous programs and resources for women, comprising nearly half of all the resources in the entire service area, yet women in Cuyahoga County are dying at an alarmingly high rate. Online surveys were utilized to gain further insight. Key informant interviews with select individuals who completed the surveys were also conducted to gather more detailed information related to programs and services. Survey respondents and key informants reported a variety of reasons for women not accessing screening services. Women least likely to get mammograms were said to be under/uninsured (85.1%), living in poverty (87.2%) with low literacy rates (65.2%) and possible language barriers (57.4%). Minority populations (46.8%) and those with other health problems (37.8%) were also cited. 81.3% of those not accessing screening services were reported to have a combination of all those factors. Education and awareness programs were cited as major areas of need. It was noted that educational programs should be targeted to those community members who are not accessing the system. Specifically mentioned were minority populations and the under/uninsured. Evidence-based programs were suggested numerous times in key informant interviews with healthcare providers as appropriate interventions to reach these populations. Providers in high need areas and providers working with high need populations should also be educated on appropriate screening guidelines. If a woman is seeing her primary care physician for a different health condition, they have an opportunity to educate her on breast health practices and refer her for a mammogram. Many respondents stated that a woman is more likely to follow through with positive health practices if recommended by her doctor. It was also reported that providers are in need of education on subjects such as the state Breast and Cervical Cancer Project. Patient navigators, another evidence-based program, were mentioned by providers as great resource for women. The barrier to moving a woman through the continuum of care appearing most often was financial burden. 82.3% of respondents reported a need for financial assistance programs for women seeking mammography and diagnostic services. Financial assistance programs helping with issues such as transportation (78.8%), mobile mammography and bilingual services (53.8%) were cited by survivors and providers as ways to increase screening rates. Programs assisting with cost of living expenses during treatment also emerged as an area of concern. Partnerships and Opportunities Komen Northeast Ohio partners with numerous agencies, community groups, social service agencies and non-traditional partners to address breast cancer disparities in the service area, including the Minority Health Alliance in Cleveland. The Affiliate Mission

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Coordinator currently sits on their Executive Committee. It would benefit the Affiliate to partner with existing programs and coalitions identified through the asset collection process, like the Women in Action against Cancer Coalition in Jefferson County, or to support the creation of a breast cancer coalition focusing on key issues as outlined in this report. The Affiliate is also working towards expanding Komen’s presence in the outlying areas through several Affiliate initiated programs. Eight Pink Tie Guys, representing the one in eight women who will be diagnosed with breast cancer in her lifetime, serve as ambassadors for the Affiliate and promote the Komen message throughout their one year term. In 2010, Komen Northeast Ohio launched the Community Champions program, engaging two key community members in the Mahoning Valley area. This program will expand in the next year, reaching out to Summit and Stark Counties. Every year the Affiliate hosts a symposium in Cleveland for survivors to learn about advances in treatment and care and to network with other women. Komen Northeast Ohio also has an established speaker’s bureau, the Komen Community Representatives. This group of trained volunteers delivers the message of Komen out in the communities we serve. Komen Northeast Ohio plans to continue expanding all of these programs into areas where Komen’s presence has been minimal or non-existent. Since the service area expansion in 2009, the Affiliate has made great inroads with agencies and organizations in the seven newly acquired counties. Out of the 24 organizations funded in 2010, four provide services in or to those counties. Traveling grant trainings in 2010 allowed the Affiliate a greater opportunity to increase the amount of applicants from priority markets. Applicants were also given the opportunity for a technical assistance session with the Affiliate Programs Director and the Grant Committee Chair. These concentrated efforts were validated by a significant improvement in the quality and geographic reach of the grant applications submitted. Public Policy Perspectives The Ohio Breast and Cervical Cancer Project (BCCP) is a statewide, high quality breast and cervical cancer program offered at no cost to eligible women in Ohio. The BCCP is administered by the Ohio Department of Health (ODH) Bureau of Health Promotion and Risk Reduction. Program funding is provided by the Center for Disease Control and Prevention (CDC), with funds supplemented by state and local governments. In Ohio, a woman is eligible for BCCP if she meets the following criteria: lives in a household with income less than 200% of the federal poverty level; has no health insurance; is 40 years of age or older to receive pap tests, pelvic exams and clinical breast exams, or is 50 years of age or older to receive a mammogram. An additional part of this program is that a woman is eligible for BCCP Medicaid if she is diagnosed with breast cancer through this program. BCCP Medicaid covers all aspects of her treatment. Ohio’s BCCP program operates under the most restrictive requirements for accessing treatment, requiring women to receive a diagnostic procedure by a BCCP provider physician in order to be enrolled in the BCCP Medicaid program. If an eligible woman is

screened at a facility whose providers are not contracted with the BCCP, she is determined to be ineligible for the program and therefore unable to access BCCP Medicaid. Due to the restrictions on accessing treatment, Komen Northeast Ohio requires all grant applicants to have an established relationship with the BCCP. The Cleveland Clinic Main Campus, which houses Taussig Cancer Center, is not a contracted provider for the BCCP and thus limits the amount of funding the Affiliate is able to grant them. According to Sarah Gudz, the Ohio BCCP Programs Manager, in 2008 (the most recent data available) 150,601 women, or 8% of the female population in the state of Ohio, were eligible for BCCP screening funds. However, the number of women who are actually served by the BCCP depends entirely on the capacity of the program, which is determined by the amount of funding the program receives. For the 2010-2011 program year, it is estimated that 13,424 women will be served with state and federal funds. Funding for that year reached $4,243,208 from the CDC with an additional $735,991 from the state. Late in 2010, the program was awarded additional money from the Tobacco Master Settlement Account funds and will be able to provide screening for an additional 3,500 women. The Northeast Ohio Affiliate has a strong working relationship with the Ohio BCCP program, both at the state and local level. The state relationship is nurtured through the Komen Columbus Affiliate, and the Northeast Ohio Affiliate provides or has provided funding for all four BCCP regional enrollment agencies located within the service area. Komen Northeast Ohio has been a strong ally for the BCCP, advocating on their behalf and leveraging key relationships with local legislators to push a bill to increase funding for the BCCP through a tax check-off box. However, with the recent national and state budget crisis, the program’s ability to screen eligible women and their future stability is in jeopardy. Programs and Services Findings and Conclusions The Affiliate strives to support a broad spectrum of helpful resources from education, to screening services, to survivor support. In-depth analysis of the programs and services available to women in Northeast Ohio demonstrates that the area is extremely diverse and presents a unique set of challenges in promoting breast health. Efforts should be made to adapt and replicate effective evidence-based programs in the communities of interest. Programs offering financial assistance for screening and treatment should be regarded as a high priority for Komen Northeast Ohio funding. Advocacy efforts to support the BCCP will continue at the Affiliate level. Work on the tax check-off legislation will be put on hold until the future of the program is determined in the 2011-2013 state budget. The Affiliate will also continue to advocate to lessen the restrictions on accessing treatment through the BCCP. Every effort is now being made to secure the national and state supplemental funding for this program. It is in the Affiliate’s interest to make all healthcare providers more aware of the BCCP program so they can direct women through the system more effectively.

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Breast Cancer Perspectives in the Target Communities Methodology In addition to the online surveys and key informant interviews, focus groups were conducted in three communities of interest to further investigate the state of breast cancer in Northeast Ohio. These focus groups allowed for a greater understanding of a woman’s experience within the healthcare system and helped tell the story behind the statistics. One survivor focus group was conducted in Cuyahoga County and consisted of eight Latina women. Focus groups could not be conducted in the target communities of Richland, Lorain, or Mahoning Counties due to time constraints and scheduling difficulties. Because of this, another survivor focus group was conducted in Ashland County, which neighbors Richland County. Of the 14 Caucasian women who participated in the Ashland County focus group, six were residents of Richland County. These focus groups took place at survivor support groups provided by current Komen Northeast Ohio grantees. A provider focus group was conducted in Jefferson County with the help of Region Nine BCCP Coordinator and Community Profile Team member Janet Sharpe. All focus groups were conducted in February of 2011. It is important to note that both of the survivor focus groups contained the viewpoints of survivors only, and not those of women and/or community members who have not tried to access the healthcare system. The reasons why women and/or community members choose not to, or cannot, access the healthcare system will vary across geographic, ethnic, cultural, etc., boundaries. This, in turn, limits the data the Affiliate was able to collect and analyze. The Affiliate also conducted a PhotoVoice (PV) project to accompany the Community Profile report. PV is a process through which people can identify, represent and enhance their community through a specific photographic technique. The goal of the Affiliate’s PV project is to identify, recruit and create a picturesque dialogue with a target group of survivors in Cuyahoga County. Four under/uninsured African American and two Latina women from the East Cleveland area were recruited for this project. Tameka L. Taylor, Ph.D., Partner & Consultant of Compass Consulting Services, LLC was the lead in the data collection process for the Northeast Ohio Affiliate. She facilitated the survivor group in Ashland, while Jessica Cartagena facilitated the group in Cuyahoga County. The Affiliate Mission Coordinator facilitated the healthcare provider group in Jefferson County. Each of the groups lasted about 90 minutes. The survivor focus groups were tape-recorded and participants were informed verbally at the beginning of the session. Participants were insured confidentially would be upheld and that no comments would be specifically attributed to them. Consent forms were signed by all participants and a $25 Visa gift card was provided to survivor participants as a thank you for their participation. The recordings were used to review the content of each group for writing this report.

The PV project occurred over two months and was led by Community Profile Team member Lena Grafton and her partner Meia Jones. Participants were recruited through community outreach initiatives and Northeast Ohio grantee recommendations. A Komen Northeast Ohio grantee also provided a free space for all of the PV meetings. The participants met four times for an hour each over one month, covering orientation, how to use cameras to share their breast cancer story, discussion of their photos, and major themes. Review of Qualitative Findings

213 surveys were completed by survivors, representing at least 13 different counties. Over 53 percent of respondents came from Cuyahoga County. The participants in the survivor surveys had varied backgrounds. They were primarily Caucasian (93.6%), with a few African American (4.8%) and Multiracial (0.8%) participants. Their education levels ranged from no high school diploma to those with graduate degrees. The largest percentage (26.2%) of respondents had bachelor’s degrees. The annual household income levels ranged from less than $15,000 to $100,000+ homes, with the largest number of women coming from the $100,000 (37.5%) category. However, it must be noted that approximately 46% of the respondents did not answer this question.

Survivor Survey

The strongest themes reported from this group were the need for more financial assistance programs and knowledge of the current programs for those in need of screening and treatment. Many of the financial needs were for prescriptions, co-pays, wigs and parking. There was also a need for direct financial assistance in basic areas such as rent, utilities and groceries, especially for those who have to take off work for long periods of time while receiving treatment. Another theme that emerged from the surveys was the need for resources on the recurrence of breast cancer as well as individual and family counseling. Additionally, themes emerged regarding barriers to screening. This group reported financial assistance, traveling mammography programs, patient navigation, weekend/after hour services and reminders of scheduled appointments as options to break down those screening barriers.

Breast healthcare providers, including several Komen grantees and BCCP coordinators, completed 72 surveys and represented six counties. The largest responders were from hospitals (69.6%) and non-profits (30.3%). Current grantees made up the next highest percent (25.6%), followed by Race sponsors and personal/volunteers (both at 22.7%). Following them were those with no relationship with the Affiliate (20.3%).

Healthcare Provider Survey

Several themes emerged in the provider surveys, most notably the confusion among women they serve about the timing of their first mammogram and screening frequency. Financial needs were a theme for this group as well. The majority felt the current

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healthcare system does not adequately screen all eligible women. Additionally, a large percentage of them felt that under/uninsured women and those living in poverty were less likely to be screened. Providers also reported barriers to collaboration with other breast health agencies. They reported the largest barriers around issues of trust and capacity. Additionally, there was a theme around complicated paperwork as well as women not having stable addresses/phone numbers as organizational barriers to screening and treatment rates.

The 34 community leaders came from several different kinds of organizations like the healthcare providers. The largest group was from non-profit organizations (50%). The next largest group was from hospitals (34.6%). An equal amount of representation came from health departments, community clinics, government organizations and other healthcare provider agencies (7%). The largest group had personal/volunteer relationships (61.5%) with Komen Northeast Ohio. Grantees made up the next group (34.6%) of respondents, followed by those with no relationship with the Affiliate (15.4%).

Community Leader Survey

There were several themes that emerged from this group of surveys. They identified the main barriers to accessing screenings as under/un-insurance rates, living in poverty, language barriers and low literacy rates. They also saw confusion for women around the timing of their first mammogram and the frequency of getting them. They too did not see the current healthcare system as effective in meeting the needs for breast screenings. However, unlike healthcare providers, this group did not see the current healthcare system as effective in meeting the needs for treatment of breast cancer. Once again financial assistance for screening was seen as the best way to improve rates. Also, transportation and traveling mammography vehicles were seen as an additional means to increase screening rates. Complicated paperwork was seen by the community leaders as the largest organizational barrier for women attempting to get financial assistance for screenings.

15 healthcare providers and community leaders participated in the key informant interview process, representing a variety of organizations and regions, including rural, urban and suburban communities of various sizes. These organizations serve populations with various racial backgrounds, educational levels and family structures. There are also specific populations that some providers work with, such as the Amish/Mennonite communities.

Key Informant Interviews

There was a consistent theme in the interviews surrounding outreach programs reaching women in need through a large variety of non-traditional venues, such as senior centers, beauty shops, churches, mental health organizations, restaurants, and grocery stores. It was reported that many women in need of services are not going to hospitals, so it’s important to get the information to them through other channels. Mammogram screenings were high on the list in terms of financial assistance needs.

Additionally, issues with assistance for transportation came up. Like the other data collected, the under/uninsured population showed up as a major concern. Fear related to mammography and breast cancer also emerged from the interviews. There was a concern that most programs are treatment based rather than focused on early detection. There was more emphasis within the interviews on the role cultural issues and competencies play in accessing screenings, diagnosis and treatment options. Education was another theme that presented, which would help alleviate the confusion around when and how frequently to have screenings, as well as a need for women to be screened at an earlier age, especially if there is a family history of breast cancer.

Survivor Focus Groups

Cuyahoga County Eight Latina women participated in this survivor focus group. These women had many different stories in terms of their diagnosis, treatment and length of survivorship. Their ages ranged as well. This Latina group revealed unique concerns. The need for Spanish materials and bilingual healthcare providers working in all areas along the continuum of care was indicated. Advertising within the Latina media (television, radio, etc.) was suggested as a way to increase awareness in the Latina community. Ashland County 15 Caucasian women (six from Richland County, nine from Ashland County) participated in this group, also with unique stories of survivorship. There was at least one woman who is currently in treatment. There was a large age range within the group. This group had different concerns compared to the group in Cuyahoga. They discussed the need for more proximal access to healthcare providers and knowledgeable prosthesis providers, among others. This group noted they often had to drive far distances to get assistance since services are not available locally. Comparisons between groups There were several themes that emerged in both survivor focus groups. One was the need for support and education programs for family members and employers of survivors. Another was the need for more education, awareness, services and support for younger women so they would begin looking for breast cancer earlier. Financial assistance was once again a concern for many of the participants, including but not limited to the need for insurance coverage during treatment. They also reported financial assistance for transportation, childcare, gas money, and prosthesis as needs. Additionally, the importance of the knowledge and attitude of the doctor was a key theme that emerged.

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Eight providers serving Jefferson County participated in this focus group. Several of the findings that emerged for this group echoed the voices of the survivor focus groups, while there were others unique to them. Some of that uniqueness may be related to the geographic location and the demographics within the communities they serve.

Healthcare Provider Focus Group

This group described the population they work with as the “working poor,” often Amish women, who are under/uninsured. They discussed the importance of education on screening and support, but noted this would be challenging as it would require a change in the culture of the community. Many of the people in this area were also described as being “not medically sophisticated” and they do not commonly seek care from doctors. Additionally, health literacy seems to be lacking from most school curricula. The providers noted that “healthcare is not a priority when there are so many other issues to worry about,” which appeared to be attributed to women taking care of everyone else and neglecting themselves in the process. Outreach was said to be key for this area and population, and outreach initiatives should be education based. One suggestion from this group was to provide education regarding misinformation on screenings such as: breast cancer is “an old woman’s disease”; media coverage emphasizing small studies; and ACS dropping their Breast Self Exam program and telling women there was no need to do self examinations. BCCP training should take place for all staff including receptionists, nurses, technicians, etc. The training should include an explanation of what the program is, as well as program eligibility. Several concerns emerged for women not getting into the BCCP program because their income is sometimes as little as $50 too high to be eligible. There is also a long waiting list for enrollment due to lack of funding for the BCCP. Issues of collaborations and current staff shortages were brought up. Providers now have more work to do with fewer resources. Paperwork is time consuming and they often assist current patients who need their “hand held through the whole process, which takes up more time.” Genetics was another area the providers stressed as an area that needs to be explored further.

Six survivors (four African American and two Latina women) were originally recruited to participate in this process. However, only the four African American women turned in their photos and were present for the final group meeting where themes were discussed. The survivors chose to divide their photographs into five different areas: Healthcare, Empowerment, Environmental, Spirituality, and Support/Financial. The resulting photographs from this project will be made into a special booklet to use for multiple Affiliate initiatives.

PhotoVoice Group

Conclusions Several key themes emerged during the data collection process, reinforcing the findings from the previous two sections. One was the need for more education and awareness around breast cancer and screenings to break down barriers to care related to fear or not knowing about screening recommendations. Related to that is the need for more education, awareness, services and support for younger women so they can begin looking for breast cancer sooner, thus increasing their chances of survival. As reported earlier, financial assistance was a major concern for many of the participants, including advocacy efforts for insurance during treatment, financial assistance for screening, transportation, childcare, gas money, and prosthesis.

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Conclusions and Affiliate Action Plan Putting the Data Together A review of demographic and breast cancer data revealed the severe impact breast cancer has on our service area, especially in regard to breast cancer mortality rates and late stage diagnosis. There are many areas and populations adversely affected by breast cancer. Komen Northeast Ohio focused on five priority communities of interest in the service area. These target areas were selected due to their ranking within the 22 counties based on the following criteria: high rates of breast cancer incidence, high rates of women over 40, high mortality rates, low screening rates, high levels of late-stage diagnosis, and demographic information, including population size and make-up, and insurance levels. Cuyahoga, Lorain, Mahoning, Richland and the combination community of Harrison, Jefferson and Belmont Counties were all chosen as regions most in need of further investigation. Analysis of the programs and services in Northeast Ohio revealed a shortage of providers and resources in certain areas. However, even in areas filled with resources and healthcare services, including one of the top cancer treatment centers in the nation, many women still cannot access necessary screening and care. The targeted regions face different challenges in this area, as the populations making up the communities are highly diverse. The BCCP works very well with stakeholders in all target areas, but the threat of losing vital funding affects the programs capacity to screen every eligible woman. There is a need to educate healthcare providers along the continuum of care as to what the BCCP program is and how a woman qualifies. The statistics and programs and services findings set the stage for gathering exploratory data on breast cancer survivors’ experiences through the continuum of care in three communities of interest. Surveys, key informant interviews, focus groups and a PhotoVoice project provided a more personal, comprehensive view of the strengths and weaknesses in their communities. Selecting Affiliate Priorities The Affiliate Mission Coordinator and the Affiliate Programs Director, along with input from The Prevention Research Center and Community Profile Team members, selected and ranked the Affiliate priorities. The priorities were presented to and approved by the Affiliate’s Board of Directors in March of 2011. These priorities were selected after reviewing the needs addressed by community members and leaders in the report and discussing the most effective ways for the Affiliate to address the identified problems, both at the local level and the greater, systemic level. They will directly affect Komen Northeast Ohio’s 2012-2013 strategic planning, the 2012 Request for Grant Applications, and other mission and non-mission related efforts. The priorities will also lay the groundwork for a transformational initiative the Affiliate is currently undertaking, from which strategic objectives will be determined and published at a later date.

Komen Northeast Ohio Priorities Priority 1: Systemic Issues - Develop and strengthen relationships with stakeholders and non-traditional partners along the continuum of care to increase access and reduce systemic barriers. Priority 2: Education/Awareness - Increase breast health awareness and education programs, including early detection and screening information, for women most in need of services, with a focus on minority populations. Priority 3: Access – Increase access to screening and treatment services for the low-income, under/uninsured, working poor and minority populations.