SUSAN G. KOMEN COLORADO SOUTH EXECUTIVE SUMMARY

Transcription

1 SUSAN G. KOMEN COLORADO SOUTH EXECUTIVE SUMMARY

2 Acknowledgments The Community Profile report could not have been accomplished without the exceptional work, effort, time and commitment from many people involved in the process. Susan G. Komen Colorado South would like to extend its deepest gratitude to the Board of Directors and the following individuals who participated on the 2015 Community Profile Team: Mary Jo Rosazza, RN Grant Committee Co-Chair Marguerite Thomas, RN, MN, AOCH Outreach Nurse Navigator / WWC RN Coordinator Penrose-St. Francis Health Services Grant Committee Co-Chair Judy Croster, RN Grant Committee Member Susan Day, RN Education Committee Chair Joyce Velez Patient Navigator Latino Health Network Board of Directors Liaison Chris McCloy, RN Volunteer Barbara Joyce, PhD Community Health Professor Beth El College of Nursing, University of Colorado, Colorado Springs Rachel Lieurance Student of Political Science and World Health Colorado College Intern Nancetta Westcott, BS, MBA Executive Director

3 A special thank you to the following people and entities for their assistance with data collection and analyses, as well as providing information included in this report: Health Statistics Section, Colorado Department of Health and Environment o John Arend Beth El College of Nursing Students, University of Colorado, Colorado Springs American Cancer Society Women s Wellness Coordinators o Michelle Hubbard and Hannah Nein Cecelia Thompson MS, Latino Outreach Liaison, Penrose Cancer Center, Colorado Springs Brenda Galassini, Oncology Program Manager, Dorcy Cancer Center, Pueblo Darlyn Miller, RN, BSN, CCM, Teller County Public Health Toni Panetta, Director Mission Programs, Komen Colorado, Denver Report Prepared by: Susan G Komen Colorado South 625 North Cascade, Suite 110 Colorado Springs, Colorado Contact: Nancetta Westcott, Executive Director

4 Executive Summary Introduction to the Community Profile Report Susan G. Komen Colorado South is one of a network of Affiliates globally and one of two Affiliates in the state of Colorado that support the common vision to save lives and end breast cancer forever by empowering people, ensuring quality care for all and energizing science to find a cure. was founded in 1994 by a dedicated handful of individuals. The Affiliate s first Komen Race for the Cure took place in June The Affiliate started as Komen Colorado Springs, changed in 2010 to Komen SE Colorado in anticipation of the expansion of its service area to include 14 counties in the southeastern area of Colorado. In 2014 the Affiliate name was changed to for consistency of Komen Affiliate names in Colorado, better alignment with Colorado naming norms and to provide for future identification as growth is possible throughout all of the southern areas if Colorado. Each year distributes up to 75 percent of its net proceeds from fundraising to nonprofit organizations that provide education, breast health and breast cancer screening, and treatment support to the medically uninsured, underinsured or at-risk populations in its service area. The remaining 25 percent of funds raised supports breast cancer research through the national Susan G. Komen organization. Since the first Race, the Affiliate has raised more than $8 million through fundraising, donations and special events, with more than $6.8 million dollars in grant awards being distributed to the local community. Thirty-four (34) different agencies have received funds to provide education, breast health and breast cancer screening, and treatment support. Sixty-eight (68) grants have been funded since participates in the Colorado Cancer Coalition and in the development of the Colorado Cancer Plan. Members of the Affiliate are involved in hospital tumor boards in Colorado Springs. The Affiliate is an active participant in the Pikes Peak Breast Health Coalition, a regional group that provides an opportunity for many entities to exchange education and information relating to breast cancer awareness, status of legislative issues in Colorado and the United States, and serves as an outlet for s for mission fulfillment. and Komen Colorado have developed relationships with state and local elected officials and are considered an expert on breast health care policy within the state. The service area covers fourteen (14) Colorado counties, Alamosa, Baca, Bent, Chaffee, Costilla, Crowley, El Paso, Fremont, Huerfano, Las Animas, Otero, Prowers, Pueblo and Teller. Since its inception, the Affiliate has served El Paso, Pueblo and Teller counties through its grant-making and outreach efforts. In the future, based on information collected through the Community Profile process, Otero and Fremont counties will be added to the grant-making and outreach efforts. These five counties (El Paso, Fremont, Otero, Pueblo and Teller) have a combined estimated female population of 421,203, with El Paso County making up approximately 65 percent of the population. El Paso County is the most populous county in Colorado. Every four years Affiliates of Susan G. Komen complete a health assessment process known as the Community Profile. The purpose of the Community Profile is to ensure that the work of the Affiliate is collaborative, targeted and non-duplicative. It is intended to establish a framework for the following: Alignment of the Affiliate s strategic and operational plans Drive inclusion efforts in the Affiliate s community Establish focused granting priorities

5 Establish focused educational needs Establish directions for marketing and outreach Strengthen sponsorship efforts Drive public policy efforts Quantitative Data: Measuring Breast Cancer Impact in Local Communities The quantitative date provided by the National organization included data on female breast cancer new case incidence, female breast cancer death, late-stage diagnosis, screening mammography, population demographics and socioeconomic indicators. The data is used to identify priorities within the Affiliate service area are based on estimates of how long it would take an area to achieve HP2020 objectives for breast cancer late-state diagnosis and death. The populations in seven of the 14 counties have an income under 250 percent of the Federal Poverty Level (FPL). Overall the breast cancer death rate in the Affiliate service area was slightly lower than that observed in the US. The late-stage incidence trend was higher than the US but not significantly different for Colorado. The breast cancer screening proportion in the Affiliate service area was lower among Hispanic/Latina women and in rural counties. Information regarding breast cancer stage of disease at diagnosis (Colorado Central Cancer Registry, CDPHE, March 2014) was added by the Affiliate in the quantitative data for. Overall, the rate of early detection for breast cancer in Colorado is 72.1 percent. In, seven of the fourteen counties fall below the Colorado rate, despite improvement in the early diagnosis rate for most of the Affiliate area since the report. The late-stage incidence trend was higher than the US as a whole. In order to determine priority areas, reviewed Healthy People 2020 (HP2020) target for estimated time to reach the late-stage breast cancer diagnosis and death for each of the fourteen counties. This information was compared and categorized into potential priority levels. Based on initial quantitative data, determined that deeper analysis of five counties (Fremont, Otero, Teller, Pueblo and El Paso) was warranted. Fremont, Otero, and Teller counties are rural and border on Pueblo and/or El Paso Counties which are more urban and populous. The five counties comprise over 90 percent of the female population of. Fremont County is due west of Pueblo County and southwest of El Paso County. It has a female population of 19,819, with a generally older population, and lower education and lower income levels that Colorado and the average. Fremont is a medically underserved county with a high incidence of breast cancer, a high death rate, and a low mammography rate. It is not likely to meet either the death rate or late-stage incidence rate HP2020 targets and is designated as a high priority area. Otero County is also rural and is situated east of Pueblo County. These counties border on each other which supports collaborative efforts. It has a female population of 9,584 with a relatively large Hispanic/Latina population. The population has lower education levels, higher poverty rates, higher unemployment rates and lower mammography screening rates than Colorado and the Komen Colorado South average. It is not likely to meet the late-stage incidence rate HP2020 target and is designated as a high priority level. Teller County is also rural and due west of El Paso County. The female population of 11,186 is older than Colorado and the average. In addition there is a lower early detection rate. Teller County is not likely to meet the late-stage incidence rate HP2020 target and is designated as a high priority. Pueblo County is a slightly more urban county with about a third of the county rural. It has a female population of 79,465. Pueblo County has a lower educational level, lower income level and a slightly higher unemployment rate than as a whole. It is designated as medium high priority. El Paso County has the largest population in Colorado. It is considered urban with some rural areas. It has a female population of 301, percent of these women do not have health insurance. Although El Paso County currently meets the HP2020 target of 20.6 per 100,000 breast cancer death rate, the trend for late-

6 stage cancer rate is increasing. If this trend continues, El Paso County will not meet the HP2020 goal. It is considered a medium priority. Health System and Public Policy Analysis Women have different needs based on where they are in their journey with breast cancer, or in the continuum of care. In order to better understand the spectrum of gaps and services along the continuum of care within the target communities, an inventory instrument was developed to capture health provider information including: organization name, type of organization, scope of services along the breast health continuum of care provided, financial assistance provided, languages other than English used with patients/clients and referral patterns if specific services were not provided. Providers in the five counties were contacted. Results showed throughout the service area there are significant gaps in the Breast Cancer Continuum of Care. Access to and use of screening mammograms continues to be a significant need in the five focus counties. Diagnostic and treatment services are available in the service area, however, financial issues, travel distances and difficulty of accessing care outside an individual s community all contribute to an overall need for development of support systems in three (Fremont, Otero and Teller) of the five focus counties. Follow-up and/or survivorship support services are available in El Paso and Pueblo Counties, but these services are not easily available throughout Fremont, Otero and Teller Counties. These statistics and limited basic services in several of the five focus counties raise concern relating to access to services due to travel distance and financials limitations. Distance to more sophisticated treatment options, radiation therapy specifically, creates additional financial, employment, family obligations, as well as transportation and lodging concerns. Cultural and ethnic diversity throughout the service area may also impact utilization of services. One of the primary issues in Colorado around breast cancer screening and treatment deals with Colorado s pipeline for covering women under Colorado Medicaid Breast and Cervical Cancer Treatment Program (BCCP). According to Colorado Fiscal Year , Women s Wellness Connection screened 22 percent of an estimated 79,816 uninsured women ages at or below 250 percent FPL. Within the 14 counties that make up, an average of percent of eligible uninsured women were screened. Projections for changes in ineligibility determinations for WWC and Medicaid indicate up to 75 percent of Colorado s previously WWC eligible population now is Medicaid eligible. Women who meet the WWC eligibility requirement who have been diagnosed with breast cancer are eligible to receive treatment through Colorado s Medicaid Breast and Cervical Cancer Treatment Program. As an Option three state, women who meet all eligibility criteria may enroll in any WWC site regardless of location of diagnosis. In 2014 marked the first year when all major components of the Affordable Care Act were or had been implemented to substantial degrees. Colorado opted to develop a state-based marketplace rather than using the federal marketplace. The market place, Connect for Health Colorado, enables Colorado residents to apply for financial assistance and purchase health insurance plans that meet the minimal essential coverage provisions required. Medicaid expansion was increased to 133 percent of the FPL for all Coloradans, regardless of parenting or dependent status. One of the primary concerns for is the number of women over age 40 who remain uninsured who may need financial assistance for screening and treatment. There is an additional concern that a portion of the uninsured women will likely not be able to access health coverage due to their immigration status. Out of pocket maximums (premiums and co-pays) are concerns as well. Depending on the type of plan and premium fee, the costs for breast cancer treatment may be as high as $10,000 out of pocket costs. Qualitative Data: Ensuring Community Input Key assessment questions and variables were developed from quantitative data review and health systems and public policy analysis. This information indicated that access to breast health services was a key gap

7 throughout the Affiliate service areas. Based on an upward trend in late-stage diagnosis through the service area, it was determined in addition to location and financial issues, there may be some hesitation to access care and a gap in access to support services for breast cancer survivors. Data collection methods used were key informant interviews and surveys. Key informant interviews were determined to be the most effective and less time invasive method for soliciting information from members in the target communities with critical knowledge about breast health and breast cancer care services. Topics of the key informant interviews were related to education, screening and diagnosis, treatment, treatment support and financial resources. Key informants included Women s Wellness Coordinators, nurse navigators, case manager/social workers, outreach coordinators, and nurses and medical assistants who interact with patients. There was some difficulty reaching and interviewing key informants in Fremont and Otero County. It was determined that partnerships needed to be forged with organizations in those counties. Surveys were developed for breast cancer survivors and for the general population. Questions for breast cancer survivors related to their breast health and breast cancer care experiences and issues they encountered since their diagnosis. General survey questions where women seek care, where they get their information on breast health, motivations to seek care and barriers to care. Surveys were distributed by and hard copy format. The main issues that surfaced during the assessment process focus on awareness of and access to services along the continuum of care, including screening, treatment and support. Embedded within the framework of education and access to screening is the discussion about cultural competency of providers. Women expressed a need to feel safe and secure when navigating such a potentially vulnerable process and it is important that providers understand their unique needs and organizations offer culturally sensitive support. Both providers and survivors reiterated that the ability to navigate the system and understand options for both financial and non-financial support is critical to a woman s journey through the continuum of care. The role of the patient navigator emerged as an important component in a successful treatment plan. In all five of the target counties, the most significant finding was related to financial issues surrounding access to health care, and specifically breast health and mammograms. Coupled with financial concerns, insurance coverage or lack of insurance, for screening mammograms, diagnostic services and breast cancer treatment are issues identified across key informant and survey respondents. Another component of this overall finding from both key informants and survey respondents centered on the potential lack of education regarding the availability of grant funding from. This appeared most significantly in Teller, Fremont and Otero Counties. Access due to location of services is a secondary theme in all data sources. The source of this issue varies but encompasses transportation and local quality of care concerns. Information from breast cancer survivors indicates that patient navigation is a necessary ingredient for anyone diagnosed with breast cancer and their successful journey through the continuum of care. Based on the findings of the assessment, the Affiliate convened key volunteer and staff members to discuss the implications of the information on the community in order to help guide its grantmaking and activities for the next two years. The following action plan outlines the priorities and objectives for the Affiliate. Mission Action Plan Problem statement 1: The Health People 2020 (HP2020) Female Breast Cancer late-stage incidence rate target is 38.9 new cases per 100,000 females. It is predicted in the priority counties of El Paso, Otero, Fremont, Pueblo and Teller Counties that it will take 13 years or longer to reach that target rate. The health system analysis found that access to screening and diagnostic services is difficult for many living in areas of all the counties. Breast cancer survivors, health care providers and the general populace indicated that financial concerns and lack of knowledge regarding breast health impact the use of services.

8 Priority 1.1 Partner with community-based organizations to effectively increase access to screening and diagnostic services, as well as breast health education for women throughout El Paso, Fremont, Otero, Pueblo and Teller Counties. Objectives: By November 2015, meet with established partners in El Paso, Pueblo and Teller Counties to discuss the results of the 2015 Community Profile and access to Komen Education Materials By March 2016, hold introductory meetings with health care providers and community based organizations in Fremont, Otero and Teller Counties to discuss Komen, the results of the 2015 Community Profile and Komen Education Materials By March 2016, participate in at least one health-related community education or outreach event in each of El Paso, Fremont, Otero, Pueblo and Teller Counties By September 2016, host at least two collaborative meetings with the health care providers and community based organizations in Fremont, Otero and Teller Counties to facilitate establishing the breast health needs for their communities and develop an action plan for their community to improve screening compliance By March 2017, hold a collaborative summit with providers in El Paso, Fremont, Otero, Pueblo and Teller Counties to develop an action plan to ensure the needs of the many rural communities in the service area are able to access needed services By October 2017, partner with at least one community-based health organization from El Paso, Pueblo and Teller Counties to develop and use evidence-based education interventions when conducting breast self-awareness education activities in their community. Priority 1.2: Increase provider understanding of breast cancer screening recommendations supported by Susan G. Komen and knowledge of referral resources throughout El Paso, Fremont, Otero, Pueblo and Teller Counties to more effectively navigate their patients through the continuum of care. Objectives: By April 2016, provide at least one presentation with continuing medical education credits for providers in, focusing on El Paso, Fremont, Otero, Pueblo and Teller Counties about the most current breast health recommendations, resources available in the community, and other evidence-based programs that would increase their patients screening rates By October 2016, partner with other organizations, potentially universities and colleges and the American Cancer Society, to increase the efficient use of electronic medical records to facilitate communication with patients regarding breast cancer screening follow-up, focusing on Fremont, Otero and Teller Counties. Priority 1.3: Work with local nonprofits to incorporate best practices and evidence-based methodology to provide education and outreach in El Paso, Fremont, Otero, Pueblo and Teller Counties. Objectives By October 2016, encourage the incorporation of best practices and evidence-based programs in all grant programs and require that all funded education programs must demonstrate how their activities will lead to action, such as participants obtaining regular mammograms By January 2017, add a representative from Fremont and Otero Counties to the grant review panel.

9 1.3.3 By October 2017, evaluate status of objectives outlined under Problem Statement one and redefine if necessary to meet current needs in El Paso, Fremont, Otero, Pueblo and Teller Counties. Problem statement 2: The Quantitative Data Report found that over 25 percent of the population in El Paso, Fremont, Otero, Pueblo and Teller Counties have an income under 250 percent of the Federal Poverty Level (FPL). The health system analysis found that breast cancer treatment services were not available in Fremont, Otero and Teller counties. Breast cancer survivors and health care providers indicated that the lack of treatment services close by and financial concerns make it difficult for women to get treatment and to adhere to their treatment plan. Priority 2.1: Increase the health care system s capacity in Fremont, Otero and Teller Counties in order to provide seamless transition for women diagnosed with breast cancer to quality treatment services in the neighboring counties of El Paso and Pueblo. Objectives: By March 2017, hold at least two collaborative meetings aimed at hospitals, primary care providers, health clinics and community-based organizations to foster the discussion around how to improve continuity of care among and between referral, screening, diagnosis, treatment, and support services in El Paso, Fremont, Otero, Pueblo and Teller Counties By March 2018, hold rural breast cancer summit with providers in El Paso, Fremont, Otero, Pueblo and Teller Counties to discuss continuing partnership opportunities with the goal of increasing access to and seamless progression through the breast health continuum of care. Priority 2.2: Promote awareness and application to the grant program in El Paso, Fremont, Otero, Pueblo and Teller counties in order to increase access to services. Objectives: By September 2015, revise the Request for Application (RFA) to give priority to grant programs that take into account emerging health care changes and include the following: Use of innovative or evidence-based approaches that result in documented linkages to breast cancer screening, diagnostic, treatment and/or supportive services among the priority geographic areas identified in the Community Profile. Development or improvement in patient navigation programs for women diagnosed with breast cancer in rural and outlying areas. Address specific gaps in the breast health continuum of care by establishing collaborative relationships between entities By September 2015, revise the RFA to provide flexibility in requests that address other, justifiable needs in a specific area By October 2015, identify and contact eligible nonprofits from Fremont and Otero counties to introduce and the grantmaking program By October 2016, hold grant-writing workshops specifically for Fremont and Otero counties By September 2017, review and revise the RFA to assure that it meets current funding requirements and opportunities By October 2017, evaluate status of objectives outlined under Problem Statement two and redefine if necessary to meet current needs in El Paso, Fremont, Otero, Pueblo and Teller Counties.

10 Problem Statement 3: The 2014 national and state elections modified the legislative outlook for Colorado. Komen Colorado South anticipates the need to work with local and national legislators to advance Susan G. Komen advocacy priorities. Priority 3.1 Develop and utilize partnerships to enhance Affiliate public policy efforts in order to improve breast health outcomes of women in the Affiliate service area. Objectives By December 2015, identify and train at least two key volunteers to serve on the public policy committee to carry out the majority of the public policy efforts of the Affiliate In 2016 and 2017, partner with Komen Colorado, the American Cancer Society, the Colorado Cancer Coalition and others on advocacy and public policy efforts for the state of Colorado. Priority 3.2 Increase state legislators education and understanding of breast health issues. Objectives Throughout , participate in at least one Colorado legislative day each year By November 2016, send the first of bi-annual mailings to legislators representing the Komen Colorado South service area with the object of increasing s visibility as a trusted local resource on breast cancer Throughout , participate in conference calls with Komen Colorado to discuss joint public policy efforts and any pending breast cancer legislation, including advocating for maintaining state BCCP funding By October 2017, evaluate status of objectives and redefine if necessary to meet current needs in El Paso, Fremont, Otero, Pueblo and Teller Counties. Disclaimer: Comprehensive data for the Executive Summary can be found in the 2015 Komen Colorado South Community Profile Report.