Comprehensive Cancer Comprehensive Cancer Control Plans ImplementationControl Plans Implementationin Appalachian Communities in Appalachian Communities
ProgramProgramAppalachian Cancer NetworkAppalachian Cancer Network
Bruce BehringerBruce BehringerEast Tennessee State UniversityEast Tennessee State University
May, 2007May, 2007
East Tennessee State University East Tennessee State University Activities in AppalachiaActivities in Appalachia
Health Sciences Division: Health Sciences Division: Medicine, Nursing, Public Medicine, Nursing, Public Health, Clinical and Health, Clinical and Rehabilitative Health Sciences, Rehabilitative Health Sciences, PharmacyPharmacyDevelop community Develop community partnerships programs (1992 – partnerships programs (1992 – present) to educate health present) to educate health professions students in and professions students in and with rural and minority with rural and minority communitiescommunitiesCommunity-based participatory Community-based participatory research in cancer, diabetes, research in cancer, diabetes, obesity and substance abuse obesity and substance abuse NCMHHD Appalachian Center NCMHHD Appalachian Center for Translational Research in for Translational Research in Disparities Disparities ETSU
Rural Appalachian Cancer Rural Appalachian Cancer Demonstration Program Demonstration Program
Appropriation through CDC to “…explore, Appropriation through CDC to “…explore, identify, describe, and document cancer identify, describe, and document cancer disparities in Appalachian TN, VA and KY”disparities in Appalachian TN, VA and KY”ETSU partnered to complete 20 studies in 2001 ETSU partnered to complete 20 studies in 2001 – 2006– 2006Emphasis on qualitative inquiry using Emphasis on qualitative inquiry using community-based participatory research on community-based participatory research on Appalachian “community as place” and its Appalachian “community as place” and its influence on health influence on health Parallel ARC funded quantitative studiesParallel ARC funded quantitative studies
Available at: http://www.etsu.edu/kellogg/racdphomw.htm
Sample Study ResultsSample Study ResultsNine rural community focus groups … Nine rural community focus groups … – Confused and inaccurate knowledge and awareness, Confused and inaccurate knowledge and awareness,
physicians fifth as source of infophysicians fifth as source of infoThe Cancer Message Workshop…The Cancer Message Workshop…– Find kernels of truth in clearly incorrect statementsFind kernels of truth in clearly incorrect statementsPrimary care provider role in cancer care…Primary care provider role in cancer care…– Patents seek validation of results and plansPatents seek validation of results and plansMultiple studies…Multiple studies…– External factors (environment) seen as causeExternal factors (environment) seen as causePresentation results: Presentation results: surprise community leaders, surprise community leaders, confirm health providers sense, acknowledge confirm health providers sense, acknowledge reality of rural communities reality of rural communities
Rural Appalachian Cancer Rural Appalachian Cancer Research Review Work Research Review Work
Groups (2006) Groups (2006) Community perceptions of Community perceptions of
“What makes the experience “What makes the experience with cancer different in with cancer different in
Appalachia?”Appalachia?”
Contributing factors : what makes Contributing factors : what makes Appalachia different?Appalachia different?
Geographic characteristicsGeographic characteristics– Much of population lives in small and isolated Much of population lives in small and isolated
communitiescommunities– The mountains shape family lives The mountains shape family lives – Strong personal and culture identity with “place”Strong personal and culture identity with “place”
Health system characteristicsHealth system characteristics– Availability and access to care difficultAvailability and access to care difficult– Mistrust of “being taken advantage of” by health Mistrust of “being taken advantage of” by health
care systemcare system– Lower incomes and poor insuranceLower incomes and poor insurance– Too few providers demonstrate cultural Too few providers demonstrate cultural
competencecompetence
Contributing factors : what makes Contributing factors : what makes Appalachia different? IIAppalachia different? II
Cultural characteristicsCultural characteristics– Confidence and trust is hard to buildConfidence and trust is hard to build– General lack of assertiveness about health and General lack of assertiveness about health and
health carehealth care– People are private and proud and don’t want People are private and proud and don’t want
charitycharity– There is a strong faith in God with variable There is a strong faith in God with variable
dimensions of spirituality and fatalism dimensions of spirituality and fatalism – Minority communities are small and there are too Minority communities are small and there are too
few minority health professionals with whom to few minority health professionals with whom to create trustcreate trust
Comprehensive Cancer Control Comprehensive Cancer Control Plans Implementation in Plans Implementation in
Appalachian Communities ProgramAppalachian Communities Program
Interagency Agreement between Appalachian Interagency Agreement between Appalachian Regional Commission and CDC Division of Regional Commission and CDC Division of Cancer ControlCancer ControlProposal funded to ETSU in September 2006, Proposal funded to ETSU in September 2006, extension in September 2007extension in September 2007– Bruce Behringer, MPH, Rural and Community Health Bruce Behringer, MPH, Rural and Community Health
and Community Partnershipsand Community Partnerships– Kelly Dorgan, PhD, Department of CommunicationKelly Dorgan, PhD, Department of Communication– Gail Gerding, PhD, Department of Family and Gail Gerding, PhD, Department of Family and
Community NursingCommunity Nursing– Sadie Hutson, PhD, RN, WHNP, Department of Sadie Hutson, PhD, RN, WHNP, Department of
Internal MedicineInternal Medicine
Purposes of ProgramPurposes of ProgramIdentify facilitators and barriers to local Identify facilitators and barriers to local implementation of CCCCs and state cancer implementation of CCCCs and state cancer plans in Appalachian regionplans in Appalachian regionNot a research project but strong evaluationNot a research project but strong evaluationDescribe potential strategies for Describe potential strategies for engagement engagement and involvement of rural Appalachian and involvement of rural Appalachian communities and CCCCscommunities and CCCCsCDC intent to share with other distinctive sub-CDC intent to share with other distinctive sub-state regions across the country, across CDC state regions across the country, across CDC programs, and with national partners. programs, and with national partners.
““From plan to implementation to partnerships”From plan to implementation to partnerships”
ARC/CDC Program ARC/CDC Program Process to DateProcess to Date
Multi-partner Advisory Board Multi-partner Advisory Board – CCCCsCCCCs– National partners: ACS, CIS, ICCNational partners: ACS, CIS, ICC– Appalachian community membersAppalachian community members– Two planning meetingsTwo planning meetings
Community Cancer Control in Community Cancer Control in Appalachian Forum, October 2007 Appalachian Forum, October 2007 Mini-grant RFPs out in March 2008Mini-grant RFPs out in March 2008
FindingsFindings
Appalachia has special cancer problems, Appalachia has special cancer problems, varies by type of cancer varies by type of cancer This is only partially recognized by statesThis is only partially recognized by statesThere is a lot of cancer control activity in There is a lot of cancer control activity in Appalachia conducted by communities not Appalachia conducted by communities not connected to state plans or coalitionsconnected to state plans or coalitionsStates want to expand activities in States want to expand activities in Appalachian regions, but some not sure Appalachian regions, but some not sure how to engage with communitieshow to engage with communities
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 thanstate:NY,OH, KY
Cancer Outcomes in the Appalachian Region, Joel Halverson, 2007http://www.etsu.edu/kellogg/Cancer/Forum_Report/Part%202.pdf
Factors Influencing ParticipationFactors Influencing ParticipationPromotingPromoting ResistingResisting
Personal factorsPersonal, family or community Personal, family or community experience with cancerexperience with cancer
Living on economic edge with Living on economic edge with competing prioritiescompeting priorities
Time limited with defined roles to Time limited with defined roles to “make a difference”“make a difference”
Mistrust of government and Mistrust of government and programsprograms
Community organizations factorsGood rapport with community Lack staff and money for activities
Networking typical way of doing business in low resource community
Competing for volunteer time among many social issues
Available from:http://www.etsu.edu/kellogg/Cancer/Forum_Report/Part%201.pdf
Framing local and state relationshipFraming local and state relationshipWhat communities give What communities get
Volunteer energy, time and Volunteer energy, time and resourcesresources
Recognition and appreciation for Recognition and appreciation for issues and successissues and success
Entry into community with Entry into community with knowledge of local issues and knowledge of local issues and politicspolitics
Connections to external resourcesConnections to external resources
What CCCCs give What CCCCs getMaterials, technical expertise, training, resources field staff
Greater sense of statewide participation in plan and coalitions
Cancer data and best practice examples
Fulfill CDC requirements on participation
Available from:http://www.etsu.edu/kellogg/Cancer/Forum_Report/Part%201.pdf
Recommendations from Forum Recommendations from Forum and Advisory Boardand Advisory Board
Request for Proposals to promote engagement Request for Proposals to promote engagement resulting in awareness and involvementresulting in awareness and involvement– Frame as partnerships to use listening skills Frame as partnerships to use listening skills – Link to state plan goals Link to state plan goals – Use Give-Get Grid to identify mutual Use Give-Get Grid to identify mutual
expectations and benefitsexpectations and benefits– Promote sustained new relationshipsPromote sustained new relationships
Data driven with priority to ARC distressed counties Data driven with priority to ARC distressed counties Allow regional (multi-state) views of issues Allow regional (multi-state) views of issues Cancer as “health of public issue” with national Cancer as “health of public issue” with national policy context and implicationspolicy context and implications
Use mini-grants to demonstrate Use mini-grants to demonstrate different types of engagement different types of engagement
Proposal 1: Capture and tell your community’s Proposal 1: Capture and tell your community’s cancer storycancer story– Cancer is personal Cancer is personal – Stories part of Appalachian cultureStories part of Appalachian culture– Cancer impacts rural as “communities”Cancer impacts rural as “communities”– RFP for assistance to find, collect, produce and tell RFP for assistance to find, collect, produce and tell
stories in three communities in bordering states stories in three communities in bordering states – Mountain Empire Older Citizens (Va) selectedMountain Empire Older Citizens (Va) selected– Will ask CCCCs to help identify communities and Will ask CCCCs to help identify communities and
participate participate
Use mini-grants to demonstrate Use mini-grants to demonstrate different types of engagement different types of engagement
Proposal 2: Understand cancer incidence Proposal 2: Understand cancer incidence and mortality differences between and mortality differences between contiguous counties/regions contiguous counties/regions – Data sparks awareness and discussionData sparks awareness and discussion– Maps provide focal point to pose and explore Maps provide focal point to pose and explore
obvious county and regional differencesobvious county and regional differences– Roundtables are mechanism for CCCCs, Roundtables are mechanism for CCCCs,
partners and communities to ask “why” and partners and communities to ask “why” and and “what can be done?”and “what can be done?”
– $2,500 grant: Kentucky development districts $2,500 grant: Kentucky development districts
All-Site Death Rate Ages 35-64COUNTY RATE Exceeds 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+COUNTY RATE Exceeds By:Boone 1481 32%Clay 1497 33%Logan 1515 35%Mingo 1359 21%Wyoming 1401 25%
West Virginia Cancer Mortality Rates West Virginia Cancer Mortality Rates 1999-20041999-2004
(Counties exceed national rate by at least 25%)(Counties exceed national rate by at least 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
Prostate Death RatesNo county rates exceed the national rate by 25% or more within the 35-64 age range.
Ages 65+COUNTY RATE Exceeds By:Mineral 297 41%Preston 269 28%Wyoming 287 36%
Breast Death RatesAges 35-64COUNTY RATE Exceeds By:Jefferson 39 34%McDowell 70 140%Mercer 43 47%Ages 65+COUNTY RATE Exceeds By:McDowell 160 42%Taylor 218 94%
Colorectal Death RatesAges 35-64COUNTY RATE Exceeds By:Cabell 16 31%Fayette 22 80%Harrison 16 31%Kanawha 17 39%Raleigh 17 39% Ages 65+COUNTY RATE Exceeds 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%
Lung Death Rates Ages 35-64COUNTY RATE Exceeds 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+COUNTY RATE Exceeds 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%
West Virginia: Specific Cancer Rates
Use mini-grants to demonstrate Use mini-grants to demonstrate different types of engagement different types of engagement
Proposal 3: Replicate Community Cancer Proposal 3: Replicate Community Cancer Control Forum in Appalachian Cancer Control Forum in Appalachian Cancer through state CCC coalitions through state CCC coalitions – Mutual lack of awareness/communication Mutual lack of awareness/communication
between state and local community effortsbetween state and local community efforts– Forum used to identify and present “best Forum used to identify and present “best
practices” by Appalachian communitiespractices” by Appalachian communities– Build on Give-Get findings to promote mutual Build on Give-Get findings to promote mutual
benefits benefits – $5,000 grants: Kentucky and Ohio $5,000 grants: Kentucky and Ohio
Logic Model and Logic Model and Program Evaluation Program Evaluation
Resources ProgramActivities
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
The Program Mini-grant ModelThe Program Mini-grant Model
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
The “cancer environment” context
Timeline, 2008Timeline, 2008
Distribute mini-grants February RFP Distribute mini-grants February RFP Round 1 Round 1 April review and selectionApril review and selectionMay- November implementation May- November implementation May announce Round 2 RFPs for forum May announce Round 2 RFPs for forum and roundtable and roundtable November-DecemberNovember-December– Program evaluationProgram evaluation– Second Forum Second Forum
Disparities are defined by differences: Disparities are defined by differences: Race and Place Differences for Appalachian Race and Place Differences for Appalachian
African Americans represents a “Double Disparity”African Americans represents a “Double Disparity”Genderdifferences
Racialdifferences
Race andplace differences
Place differences
Comparison of Cancer MortalityComparison of Cancer Mortality Rates by AgeRates by AgeFor Appalachian County Rates within Thirteen StatesFor Appalachian County Rates within Thirteen States
With United States Rates, 1999-2004With United States Rates, 1999-2004Percent of National Rate
for All CancersNumber of six cancers for
which Appalachian rate is higher than state
Cancers for which rate exceeds 25% of national rate
Age at mortality 35-64 65+ 35-64 65+ 35-64 65+
States
Alabama +15% +3% 3 3 Lung, prostate Prostate, cervical
Georgia +5% -1% 3 2
Kentucky +41% +16% 6 5 Lung Lung
Maryland +9% +1% 4 4
Mississippi +19% -1% 4 3 Lung, prostate Prostate, cervical
New York +2% +4% 2 6 Cervical
North Carolina +6% -3% 4 2
Ohio +22% +8% 5 6
Pennsylvania +4% +4% 2 2
South Carolina +9% +1% 3 4 Lung
Tennessee +19% +5% 4 3 Lung Skin
Virginia +14% +2% 4 2 Lung Skin
West Virginia +19% +10% 5 3 Lung, cervical Lung
How Appalachian Program can How Appalachian Program can Help CCCCs meet CDC GuidelinesHelp CCCCs meet CDC Guidelines
Participation in development, implementation and Participation in development, implementation and evaluation of priorities for the comprehensive cancer evaluation of priorities for the comprehensive cancer control plancontrol planRecruitment of new members and partners to the Recruitment of new members and partners to the decision-making and communication processesdecision-making and communication processesEnhancement of the diversity of community support for Enhancement of the diversity of community support for and commitmentand commitmentAddition of community organized and operated cancer Addition of community organized and operated cancer control activities that are currently unaffiliated with control activities that are currently unaffiliated with CCCCs as an additional represented sector to the CCCCs as an additional represented sector to the coalitioncoalitionPromotion of greater awareness of state Plan and Promotion of greater awareness of state Plan and coalition within the Appalachian regions. coalition within the Appalachian regions.
