COMMUNITY PROFILE REPORT Susan G. Komen for the Cure Greater Cincinnati Affiliate 2009
Acknowledgements We would like to extend a profound thank you to the organizations and community members who assisted with this effort. Komen Greater Cincinnati Affiliate Community Profile team members: Nyota Stoker, MPH, MS, CHES Project Director The Mammography Project, Cancer Family Care Aimee Tillett, BSH Health Education Coordinator Hispanic Breast Health Outreach Program, YWCA of Greater Cincinnati Linda Croucher Board Member and Advocacy Chair Breast Cancer Alliance of Greater Cincinnati Heather Ray Breast Cancer Survivor Komen Greater Cincinnati Affiliate volunteer Heidi Sucharew Intern University of Cincinnati Peggy Isenogle Executive Director - Mission Komen Greater Cincinnati Affiliate A special thank you to the following contributing partners: University of Cincinnati Cancer Family Care Breast Cancer Alliance of Greater Cincinnati Y.W.C.A. of Greater Cincinnati 2
Table of Contents Executive Summary... 4 Overview Demographic and Breast Cancer Statistics Key Findings... 4 Overview of Programs and Services Key Findings... 5 Overview of Exploratory Data Key Findings... 6 Narrative of Affiliate Priorities... 7 Affiliate Action Plan... 7 Introduction... 9 Affiliate History... 9 Description of Service Area (can include map)... 9 Purpose of Report... 9 Demographic and Breast Cancer Statistics... 11 Data Source and Methodology Overview... 11 Demographic & Breast Cancer Statistics... 11 County/Counties of Interest: What the Data Shows... 15 Demographic and Breast Cancer Findings... 19 Programs and Services... 20 Data Source and Methodology Overview... 20 Programs and Services Overview... 21 Partnerships and Grant Opportunities... 36 Best Practices and Evidenced-Based Programs... 37 Public Policy Perspectives... 37 Programs and Service Findings... 39 Exploratory Data... 43 Data Sources and Methodology Overview... 43 Exploratory Data Overview... 44 Exploratory Data Findings... 47 Conclusions... 49 Putting the Data Together... 49 Selecting Affiliate Priorities... 50 Affiliate Action Plan... 51 References..52 3
EXECUTIVE SUMMARY 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 and launched the global breast cancer movement. Today, Komen for the Cure is the world s largest grassroots network of breast cancer survivors and activists. Founded in 1997 as the Komen Greater Cincinnati Race for the Cure our affiliate has grown from a Race event with 2,700 participants realizing $170,000 in revenue to a combined Race/Affiliate revenue of over $1.6M in fiscal year 2008. In the last 11 years we funded over $4.8M in local programs to address screening, education, and treatment of breast cancer. Additionally, we have contributed over $1.3M toward the Susan G. Komen for the Cure Breast Cancer Research and awards program. The contributions to these programs made by the Komen Greater Cincinnati Affiliate are in support of our Promise to save lives and end breast cancer forever by empowering people, ensuring quality care for all and energizing science to find the cure. Description of Service Area There are 21 Counties, in 3 States (Ohio, Kentucky and Indiana) in the service area of the Susan G. Komen for the Cure Greater Cincinnati Affiliate. 13 Ohio Counties: Adams, Brown, Butler, Clermont, Clinton, Darke, Greene, Hamilton, Highland, Miami, Montgomery, Preble and Warren. 5 Kentucky Counties: Boone, Campbell, Gallatin, Grant and Kenton. 3 Indiana Counties: Dearborn, Ohio and Switzerland Overview Demographic and Breast Cancer Statistics Key Findings Of the twenty-one (21) counties in the Greater Cincinnati service area there is a total population of 3.1 million persons (Thompson Reuters, 2007). Of those, the number of women over the age of 40 is approximately 660,000 (47%), 7% of families live below the poverty level, and uninsured women between the ages of 18-64 make up 11.5% of the population, compared to 49%, 8%, and 13% respectively for the state of Ohio (Thompson Reuters, 2007). Within the Affiliate service area, breast cancer incidence is higher than the Ohio rate (230.8 per 100,000 versus 203.6 per 100,000) (Thompson Reuters, 2007). However, the mortality rate is slightly lower in the Affiliate service area compared to the state of Ohio mortality rate (383.8 per 100,000 versus 338.5 per 100,000) (Thompson Reuters, 2007). Hamilton County, OH has the highest incidence rate, although the rates for Campbell and Kenton counties in Kentucky and Clermont County in Ohio are also high 4
(Thompson Reuters, 2007). Hamilton County, OH also has the highest mortality rate (30.8 per 100,000) in the service area with Dearborn County, IN having the lowest mortality rate (17.9 per 100,000) (Thompson Reuters, 2007). Among the expanded counties, Greene County, OH has the highest incidence rate, although the rate for Miami and Darke counties are high as well. Darke County, OH has the highest mortality rate (35.6 per 100,000) and Clinton County, OH showing the lowest (20.9 per 100,000) (Thompson Reuters, 2007). Female breast cancer incidence rate by age for the affiliate service area mostly conform to the Ohio age distribution with the highest incidence rate among women age 65+ years (Thompson Reuters, 2007). The same is true for women in the expanded service area counties. When reporting the number of women age 40+ who have never had a mammogram in the past 12 months, Switzerland County, IN has the highest percentage (42%) and Adams County, OH (43%) among the expanded counties (Thompson Reuters, 2007). Six of the fourteen counties in the service area report percentages greater than or equal to the Ohio state average of 37% and all but one of the seven expanded counties have percentages of women 40+ who have never had a mammogram in the past 12 months, greater than or equal to the state of Ohio average (Thompson Reuters, 2007). Due to the numbers of women in our newly expanded service area who have not received a mammogram in the past 12 years, strong efforts will be made to provide screening and outreach services to these areas for the upcoming grant cycle. Overview of Programs and Services Key Findings The Greater Cincinnati program and services assessment included collecting and mapping key providers in our service area. We compiled this data using a provider survey, Ohio Department of Health website, Greater Cincinnati Komen breast health resource guide as well as a listing of local affiliate Komen grantees. Approximately 262 surveys were sent via e-mail to breast cancer organizations and institutions. Forty-four surveys were returned after follow-up phone contact was made. Those responding represent a range of provider types, including hospitals, governmental agencies, grant organizations/non-profits, and support groups. Mapping was used to assess distribution and availability of providers and partners compared to statistical data. The Greater Cincinnati asset map includes information for each state on hospitals and clinics, Komen grantees and non-profit organizations which can be utilized for entry into the communities. The mapping process also showed us areas where breast cancer support services may be lacking or areas where we could do further research. The results of the provider survey indicate that most organizations primarily serve women who are uninsured, low-income, and Caucasian. Financial assistance seems to be the most beneficial support service that is offered by these organizations and the second is patient navigation. Some of these programs are offered in conjunction with 5
the Breast and Cervical Screening Project. Most of these organizations are designed to serve anyone in the general service population who meet eligibility requirements rather than a specific sub-population. The non-profit hospitals provide more advanced screening and treatment. These institutions report providing services on a sliding scale, accepting Medicare, and administering low-cost detection for women who qualify via special programs, along with serving the insured. Only the Barrett Center and Jewish Hospital reported providing transportation services among those surveyed. The American Cancer Society and Cancer Family Care offer the greatest array of support services. These include programs such as Reach to Recovery, Cancer Survivor Network, Look Good Feel Better, and the National Cancer Information Center. The majority of these organizations provide services and materials in English, with some limited Spanish speakers and materials available. Overview of Exploratory Data Key Findings Forty-four provider surveys were completed by key personnel from hospitals, medical centers, public health clinics, and support groups/non-profit organizations. The provider survey included a mixture of 22 closed and open ended questions and was implemented using the online survey tool Survey Monkey. Questions in the survey aimed at understanding what services are offered/provided by these organizations located in the Greater Cincinnati area. Additionally, the questions drew out perspectives on access barriers for residents of the service areas, perspectives on high risk groups as well as ideas on approaches to address underserved populations. Two hundred and sixty-four surveys were completed by survivors of breast cancer who rely on the services and support available in the Greater Cincinnati Service area. The survivor survey included a mixture of 36 closed and open ended questions and was implemented using the online survey tool Survey Monkey. Questions in the survey aimed at understanding trends in breast cancer screening, diagnosis, treatment, and support services utilized. Additionally, the questions drew out perspectives on access barriers, screening/mammography barriers, treatment barriers, as well as perspectives on greatest needs of breast cancer survivors and breast cancer support services that are lacking in the service areas. The majority of the survivor survey responders were Caucasian females of age 50-59 years. The majority of the respondents indicated that they received yearly clinical breast examination and yearly mammogram prior to being diagnosed with breast cancer. Breast cancer was discovered by mammogram in 41% of the respondents. Financial expense seems to be the biggest barrier inhibiting someone from getting a mammogram, inhibiting someone from seeking breast cancer treatment, and inhibiting someone from getting a clinical breast exam. Again, since this service area includes both urban and rural areas, some of the areas are lacking services, as one survivor states: there are virtually none in this area. Findings indicate a need for continued financial support for individuals in need of screening and treatment and to provide services in medically underserved rural areas. 6
The data collected from the survivors of breast cancer validate that financial costs remains a barrier for individuals in need of screening and treatment. Narrative of Affiliate Priorities Priority 1: Screening The BCCP program and SEI Cancer Health Network have both helped increase access to free screenings for women 50+ who cannot afford screenings. Data from the Thomson Reuters data packs indicate that there is a lack of screenings among women age 40+ in all counties in our service area. The affiliate will make this a priority by ensuring screening dollars or services to counties within our service area through use of mobile mammography and/or hospital partnerships. Priority 2: Support Services-Transportation and Nurse Navigator Program The provider surveys indicated that few women are assisted with their transportation needs, noting the importance of mobile vans by survivors. Providing transportation to and from screenings and treatment in urban areas and bringing services into rural areas alleviates this barrier. Nurse Navigator Programs are key to routing patients through beneficial services necessary to screening and treatment. By establishing a nurse navigator program there is the possibility of decreasing mortality rates because of they are aware of the quality services available to them. Priority 3: Outreach and Education Increased knowledge through outreach and education and prevention programming is key to reducing barriers such as fear and cultural mindset or improving access to breast health care. Survivors from the NCI cluster survey data supported the need for population-specific education. Mammogram utilization data showed that significant percents of women 40 years and older in all three states are not getting annual mammograms. Affiliate Action Plan Priority 1: Screening The plan of action for the Greater Cincinnati Affiliate would be to increase screening in the counties of the expanded service area through the use of mobile mammography and collaboration with existing programs and services in the county. Priority 2: Support Services-Transportation and Nurse Navigator Program To provide funding to local agencies and organizations to set up a voucher program between public and private transportation services. To provide funding to health departments and/or hospitals to provide nurse navigators specific to the needs of breast cancer patients. 7
Priority 3: Outreach and Education To continue to fund agency and organization grants who will provide innovative prevention programming through various community projects, collaborations, media and lay health workers. In a continued effort to decrease the mortality, funding for emergency financial assistance and treatment are crucial. As we look to the future we will need to shift the focus to funding grants that address these two areas of concern. 8
INTRODUCTION Komen Greater Cincinnati 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 and launched the global breast cancer movement. Today, Komen for the Cure is the world s largest grassroots network of breast cancer survivors and activists. Founded in 1997 as the Komen Greater Cincinnati Race for the Cure our affiliate has grown from a Race event with 2,700 participants realizing $170,000 in revenue to a combined Race/Affiliate revenue of over $1.6M in fiscal year 2008. In the last 11 years we funded over $4.8M in local programs to address screening, education, treatment of breast cancer. Additionally, we have contributed over $1.3M toward the Susan G. Komen for the Cure Breast Cancer Research and awards program. The contributions to these programs made by the Komen Greater Cincinnati Affiliate are in support of our Promise to save lives and end breast cancer forever by empowering people, ensuring quality care for all and energizing science to find the cure. Description of Service Area There are 21 Counties, in 3 States (Ohio, Kentucky and Indiana) in the service area of the Susan G. Komen for the Cure Greater Cincinnati Affiliate. 13 Ohio Counties: Adams, Brown, Butler, Clermont, Clinton, Darke, Greene, Hamilton, Highland, Miami, Montgomery, Preble and Warren. 5 Kentucky Counties: Boone, Campbell, Gallatin, Grant and Kenton. 3 Indiana Counties: Dearborn, Ohio and Switzerland Purpose of Report Susan G. Komen for the Cure s promise is to save lives and end breast cancer forever by empowering people, ensuring quality care for all and energizing science to discover the cures. To meet this promise in the Greater Cincinnati community we rely upon the data and findings obtained through the Community Profile process. To this end we will most effectively fulfill the Komen Promise in our tri-state area. A quality Community Profile guarantees that local efforts and programs supported by Susan G. Komen for the Cure are targeted, non-duplicative and allow the organization to: Drive inclusion efforts in the breast cancer community Strengthen sponsorship and donation efforts tell our story Establish targeted goals for marketing and outreach Establish accurate and focused grant funding priorities Establish accurate and focused education and outreach needs Drive public policy initiatives that complement funding needs 9
The Community Profile includes an overview of demographic and breast cancer statistics that after preliminary analysis highlight target locations, groups and issues. The statistics pinpoint where efforts will have the most impact. In order to ensure effective and targeted efforts it is important to also understand what programs and service gaps, needs and barriers exist, as well as what existing assets can be looked to for partnership and collaborative interventions. The Community Profile also includes analysis of the community within including the voices of those living in target areas and representing target populations. 10