SUSAN G. KOMEN FOR THE CURE® TRI-CITIES AFFILIATE COMMUNITY NEEDS ASSESSMENT AND BUILDING PARTNERSHIPS CHERYL YOULAND, EXECUTIVE DIRECTOR GRACE EKUA GHANSAH, MPH, CHES TONI HERRING BOUNDS, PHD, MPH COLLEGE OF PUBLIC HEALTH EAST TENNESSEE STATE UNIVERSITY APRIL 23, 2009

Introduction Susan G. Komen for the Cure, Tri-Cities® The Tri-Cities Affiliate of Susan G. Komen for the Cure® was established in 2005 to serve 22 counties in Southwest VA (9), Northeast TN(8), and Western NC(5).

Background The goal of the Tri-Cities Affiliate is to provide breast cancer education, mammograms, early detection and treatment options through its Grantees to women who are under-served or under- insured in the service region. To effectively fulfill its goal of service delivery, the affiliate completes a community needs assessment every two-three years.

Background Komen Tri-Cities contracted with researchers at the College of Public Health at East Tennessee State University (ETSU) to provide epidemiologic support and community participatory research assistance with the data collection and analysis phase of the community assessment. A team consisting of Affiliate board members and the ETSU researchers was formed.

Sources of Data Data provided by Susan G. Komen for the Cure® State Cancer Registries Local health departments/districts Cancer control programs Centers for Disease Control and Prevention (CDC) Surveillance Epidemiology and End Results (SEER) US Census data Behavioral Risk Factor Surveillance System (BRFSS) Appalachian Regional Commission (ARC)

Factors of Interest Breast cancer incidence rates Breast cancer mortality rates Demographics (age, race, income) ARC economic classification status Mammography use Insurance status

Partnerships Roundtable Meetings

County Selection for Roundtables From the data compiled by ETSU, 6 counties (2 from each of the 3 states) were selected to participate in local community qualitative data collection. The counties selected from TN: Hawkins (rural) and Sullivan (urban)

Grant Funding To help fund discussions in the 6 counties, the Team responded to a Request for Proposal from the Office of Rural and Community Health & Community Partnerships at ETSU. The team was granted $2500 to support the community roundtable discussions.

Listening to the Community Voices Roundtable Discussions

COUNTYCOMMUNITY NUMBER OF PARTICIPANTS SESSION DATE WiseBig Stone Gap14January 14, 2009 WashingtonAbingdon13January 15, 2009 HawkinsRogersville11January 21, 2009 SullivanBlountville15January 22, 2009 MadisonMarshall13February 10, 2009 Avery Linville16February 11, 2009

Roundtable Attendees 82 people participated in the discussions Participants represented: - State Cancer Registries - State Cancer Control Programs - Local health departments - Breast cancer survivors - Clergy/Nurses/Medical Staff - American Cancer Society ( ACS) - Other local cancer-related organizations

Roundtable Agenda Grant-required pre-survey Presentation about the mission and goal of Susan G. Komen for the Cure® and Komen Tri-Cities. Presentation of state and county level breast cancer statistics Presentation of state cancer plan/state coalition Roundtable Discussions Grant-required post-survey

Discussion Topics The discussions included 3 broad topics: - Barriers to accessing breast cancer services - Solutions to those barriers - Best practices

Barriers, Solutions, and Best Practices Major Themes Results of Discussions

Major Themes Barriers Lack of Transportation to screening & treatment No/inadequate insurance- high deductibles Lack of knowledge about available resources/services Do not want to know status/fear of the unknown No time; too busy Lack of Education Lack of financial support

Major Themes Solutions Knowledge of existing programs Grants for support Financial help Patient navigator Support groups Breast Health Education Relate to culture/Storytelling

Major Themes Best Practices Cancer Resource Center Good patient navigation Physicians keep tract of patients Rural health initiative Rural health grants BCCEDP/Komen/ACS grants Education – middle school & high school Pink day/Pink nails Family caregiver program School/Parish nurses Go where they are ACS programs for patients

Conclusion (Roundtable) The following emerged from all community roundtable discussions, as major themes that could be addressed by Komen Tri-Cities: - Access to screening and treatment - Transportation, free/low-cost mammograms, etc. - Comprehensive breast health education - Community, providers, physicians, women, etc. - Access to and knowledge of existing resources - Support groups, patient navigators, story telling, etc.

Reference Appalachian Regional Commission Can be found at Cancer Control P.L.A.N.E.T Can be found at Centers for Disease Control and Prevention (CDC). Centers for Disease Control and Prevention (CDC). Behavioral Risk Factor Surveillance System Survey Data. Atlanta, Georgia: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Cancer Institute Can be found at North Carolina Central Cancer Registry. Can be found at North Carolina Comprehensive Cancer Program. Can be found at State of Tennessee Comprehensive Cancer Control Plan Can be found at Surveillance Epidemiology and End Results. Can be found at Tennessee Cancer Registry. Can be found at Tennessee Comprehensive Cancer Control Coalition. Can be found at U.S. Cancer Statistics Working Group. United States Cancer Statistics: 1999–2005 Incidence and Mortality Web-based Report. Atlanta: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention and National Cancer Institute; Available at: US Census Bureau. Can be found at Virginia Department of Health Cancer Plan Can be found at Virginia Cancer Registry Can be found at

Thank you Questions/comments?