Comprehensive Cancer Control Plans Implementation in Appalachian Communities Program

1. Comprehensive Cancer Control Plans Implementationin Appalachian Communities Program Appalachian Cancer Network Bruce Behringer East Tennessee State University May, 2007

2. East Tennessee State University Activities in Appalachia • Health Sciences Division: Medicine, Nursing, Public Health, Clinical and Rehabilitative Health Sciences, Pharmacy • Develop community partnerships programs (1992 – present) to educate health professions students in and with rural and minority communities • Community-based participatory research in cancer, diabetes, obesity and substance abuse • NCMHHD Appalachian Center for Translational Research in Disparities ETSU

3. Rural Appalachian Cancer Demonstration Program • Appropriation through CDC to “…explore, identify, describe, and document cancer disparities in Appalachian TN, VA and KY” • ETSU partnered to complete 20 studies in 2001 – 2006 • Emphasis on qualitative inquiry using community-based participatory research on Appalachian “community as place” and its influence on health • Parallel ARC funded quantitative studies Available at: http://www.etsu.edu/kellogg/racdphomw.htm

4. Sample Study Results • Nine rural community focus groups … • Confused and inaccurate knowledge and awareness, physicians fifth as source of info • The Cancer Message Workshop… • Find kernels of truth in clearly incorrect statements • Primary care provider role in cancer care… • Patents seek validation of results and plans • Multiple studies… • External factors (environment) seen as cause • Presentation results: surprise community leaders, confirm health providers sense, acknowledge reality of rural communities

5. Rural Appalachian Cancer Research Review Work Groups (2006) Community perceptions of “What makes the experience with cancer different in Appalachia?”

6. Contributing factors : what makes Appalachia different? • Geographic characteristics • Much of population lives in small and isolated communities • The mountains shape family lives • Strong personal and culture identity with “place” • Health system characteristics • Availability and access to care difficult • Mistrust of “being taken advantage of” by health care system • Lower incomes and poor insurance • Too few providers demonstrate cultural competence

7. Contributing factors : what makes Appalachia different? II • Cultural characteristics • Confidence and trust is hard to build • General lack of assertiveness about health and health care • People are private and proud and don’t want charity • There is a strong faith in God with variable dimensions of spirituality and fatalism • Minority communities are small and there are too few minority health professionals with whom to create trust

8. Comprehensive Cancer Control Plans Implementation in Appalachian Communities Program • Interagency Agreement between Appalachian Regional Commission and CDC Division of Cancer Control • Proposal funded to ETSU in September 2006, extension in September 2007 • Bruce Behringer, MPH, Rural and Community Health and Community Partnerships • Kelly Dorgan, PhD, Department of Communication • Gail Gerding, PhD, Department of Family and Community Nursing • Sadie Hutson, PhD, RN, WHNP, Department of Internal Medicine

9. Purposes of Program • Identify facilitators and barriers to local implementation of CCCCs and state cancer plans in Appalachian region • Not a research project but strong evaluation • Describe potential strategies for engagement and involvement of rural Appalachian communities and CCCCs • CDC intent to share with other distinctive sub-state regions across the country, across CDC programs, and with national partners. • “From plan to implementation to partnerships”

10. ARC/CDC Program Process to Date • Multi-partner Advisory Board • CCCCs • National partners: ACS, CIS, ICC • Appalachian community members • Two planning meetings • Community Cancer Control in Appalachian Forum, October 2007 • Mini-grant RFPs out in March 2008

11. Findings • Appalachia has special cancer problems, varies by type of cancer • This is only partially recognized by states • There is a lot of cancer control activity in Appalachia conducted by communities not connected to state plans or coalitions • States want to expand activities in Appalachian regions, but some not sure how to engage with communities

12. All Appy higher than national; Appy rates higher than state: NY, MD, OH, KY, VA,TN 10 of 13 Appy higher than national; Appy rates Higher than state: NY,OH, KY Cancer Outcomes in the Appalachian Region, Joel Halverson, 2007 http://www.etsu.edu/kellogg/Cancer/Forum_Report/Part%202.pdf

14. Factors Influencing Participation Available from: http://www.etsu.edu/kellogg/Cancer/Forum_Report/Part%201.pdf

15. Framing local and state relationship Available from: http://www.etsu.edu/kellogg/Cancer/Forum_Report/Part%201.pdf

16. Recommendations from Forum and Advisory Board • Request for Proposals to promote engagement resulting in awareness and involvement • Frame as partnerships to use listening skills • Link to state plan goals • Use Give-Get Grid to identify mutual expectations and benefits • Promote sustained new relationships • Data driven with priority to ARC distressed counties • Allow regional (multi-state) views of issues • Cancer as “health of public issue” with national policy context and implications

17. Use mini-grants to demonstrate different types of engagement • Proposal 1: Capture and tell your community’s cancer story • Cancer is personal • Stories part of Appalachian culture • Cancer impacts rural as “communities” • RFP for assistance to find, collect, produce and tell stories in three communities in bordering states • Mountain Empire Older Citizens (Va) selected • Will ask CCCCs to help identify communities and participate

18. Use mini-grants to demonstrate different types of engagement • Proposal 2: Understand cancer incidence and mortality differences between contiguous counties/regions • Data sparks awareness and discussion • Maps provide focal point to pose and explore obvious county and regional differences • Roundtables are mechanism for CCCCs, partners and communities to ask “why” and and “what can be done?” • $2,500 grant: Kentucky development districts

19. West Virginia Cancer Mortality Rates 1999-2004(Counties exceed national rate by at least 25%) All-Site Death Rate Ages 35-64 COUNTYRATEExceeds By: Boone 186 32% Braxton 186 32% Calhoun 196 39% Clay 190 35% Fayette 188 34% Harrison 178 26% Lewis 194 38% Lincoln 213 51% Logan 219 56% McDowell 274 95% Mason 179 27% Mercer 179 27% Mingo 209 48% Morgan 187 33% Pleasants 219 56% Ritchie 186 32% Roane 197 40% Tucker 179 27% Wayne 189 34% All-Site Death Rate Ages 65+ COUNTYRATEExceeds By: Boone 1481 32% Clay 1497 33% Logan 1515 35% Mingo 1359 21% Wyoming 1401 25% 2008 County Economic Status Determined by ARC Map from: http://www.arc.gov/index.do?nodeId=3224 All cancer data from http://www.etsu.edu/kellogg/ Cancer/Forum_Report/Part%202.pdf

20. West Virginia: Specific Cancer Rates Lung Death Rates Ages 35-64 COUNTYRATEExceeds By: Berkeley 55 39% Boone 74 87% Brooke 59 49% Cabell 53 34% Fayette 65 65% Harrison 58 47% Jackson 55 39% Jefferson 56 42% Kanawha 57 44% Lewis 53 34% Lincoln 78 97% Logan 73 85% McDowell 103 61% Marion 50 27% Mason 69 75% Mercer 58 47% Mingo 74 87% Morgan 67 70% Preston 53 34% Raleigh 52 32% Ritchie 65 65% Roane 69 75% Wayne 70 77% Wetzel 65 65% Ages 65+ COUNTYRATEExceeds By: Berkeley 460 47% Boone 585 87% Cabell 401 28% Calhoun 443 42% Clay 529 69% Doddridge 441 41% Fayette 446 43% Harrison 428 37% Jackson 431 38% Jefferson 391 25% Kanawha 416 33% Lincoln 484 55% Logan 495 58% Marion 414 32% Marshall 404 29% Mason 457 56% Mingo 468 50% Ohio 420 34% Putnam 390 25% Roane 421 35% Summers 455 45% Tyler 413 32% Wayne 423 35% Wyoming 457 56% Colorectal Death Rates Ages 35-64 COUNTYRATEExceeds By: Cabell 16 31% Fayette 22 80% Harrison 16 31% Kanawha 17 39% Raleigh 17 39% Ages 65+ COUNTYRATEExceeds By: Hardy 189 60% Jefferson 189 60% Logan 151 28% Mingo 235 39% Nicholas 188 59% Ohio 148 25% Upshur 169 43% Wayne 159 35% Breast Death Rates Ages 35-64 COUNTYRATEExceeds By: Jefferson 39 34% McDowell 70 140% Mercer 43 47% Ages 65+ COUNTYRATEExceeds By: McDowell 160 42% Taylor 218 94% Prostate Death Rates No county rates exceed the national rate by 25% or more within the 35-64 age range. Ages 65+ COUNTYRATEExceeds By: Mineral 297 41% Preston 269 28% Wyoming 287 36%

21. Use mini-grants to demonstrate different types of engagement • Proposal 3: Replicate Community Cancer Control Forum in Appalachian Cancer through state CCC coalitions • Mutual lack of awareness/communication between state and local community efforts • Forum used to identify and present “best practices” by Appalachian communities • Build on Give-Get findings to promote mutual benefits • $5,000 grants: Kentucky and Ohio

22. Logic Model and Program Evaluation Resources Program Activities Outputs Outcomes Impact Mini-grants development Increase initiation and interaction Change awareness/attitudes Program benefits Methods to engage community Give-Get Grid More cancer control action in Appalachia Process evaluation Outcome evaluation

23. The Program Mini-grant Model The “cancer environment” context State CCCC coalitions and plans recognize and engage Appalachian region Stakeholder engagement and action by Appalachian communities in cancer control More interaction and interventions Generate new processes and outcomes: target needs, demonstrate effects, describe resources New mini-grant Logic Models

24. Timeline, 2008 • Distribute mini-grants February RFP Round 1 • April review and selection • May- November implementation • May announce Round 2 RFPs for forum and roundtable • November-December • Program evaluation • Second Forum

26. Disparities are defined by differences: Race and Place Differences for Appalachian African Americans represents a “Double Disparity” Gender differences Racial differences Place differences Race and place differences

27. Comparison of Cancer MortalityRates by AgeFor Appalachian County Rates within Thirteen StatesWith United States Rates, 1999-2004

28. How Appalachian Program can Help CCCCs meet CDC Guidelines • Participation in development, implementation and evaluation of priorities for the comprehensive cancer control plan • Recruitment of new members and partners to the decision-making and communication processes • Enhancement of the diversity of community support for and commitment • Addition of community organized and operated cancer control activities that are currently unaffiliated with CCCCs as an additional represented sector to the coalition • Promotion of greater awareness of state Plan and coalition within the Appalachian regions.