Transcript ETSU - Appalachia Community Cancer Network

Comprehensive Cancer
Control Plans Implementation
in Appalachian Communities
Program
Appalachian Cancer Network
Bruce Behringer
East Tennessee State University
May, 2007
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
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
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
Rural Appalachian Cancer
Research Review Work
Groups (2006)
Community perceptions of
“What makes the experience
with cancer different in
Appalachia?”
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
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
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
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 substate regions across the country, across CDC
programs, and with national partners.
“From plan to implementation to partnerships”
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
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
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
Factors Influencing Participation
Promoting
Resisting
Personal factors
Personal, family or community
experience with cancer
Living on economic edge with
competing priorities
Time limited with defined roles to
“make a difference”
Mistrust of government and
programs
Community organizations factors
Good 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 relationship
What communities give
What communities get
Volunteer energy, time and
resources
Recognition and appreciation for
issues and success
Entry into community with
knowledge of local issues and
politics
Connections to external resources
What CCCCs give
What CCCCs get
Materials, 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
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
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
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
All-Site Death Rate Ages 35-64
COUNTY 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
1999-2004
(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
West Virginia: Specific Cancer Rates
Colorectal Death Rates
Ages 35-64
COUNTY
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%
Breast Death Rates
Ages 35-64
COUNTY
RATE
Jefferson
39
McDowell
70
Mercer
43
Ages 65+
COUNTY
RATE
McDowell
160
Taylor
218
Exceeds By:
34%
140%
47%
Exceeds By:
42%
94%
Lung Death Rates
Ages 35-64
COUNTY
RATE
Berkeley
55
Boone
74
Brooke
59
Cabell
53
Fayette
65
Harrison
58
Jackson
55
Jefferson
56
Kanawha
57
Lewis
53
Lincoln
78
Logan
73
McDowell
103
Marion
50
Mason
69
Mercer
58
Mingo
74
Morgan
67
Preston
53
Raleigh
52
Ritchie
65
Roane
69
Wayne
70
Wetzel
65
Exceeds By:
39%
87%
49%
34%
65%
47%
39%
42%
44%
34%
97%
85%
61%
27%
75%
47%
87%
70%
34%
32%
65%
75%
77%
65%
Ages 65+
COUNTY
Berkeley
Boone
Cabell
Calhoun
Clay
Doddridge
Fayette
Harrison
Jackson
Jefferson
Kanawha
Lincoln
Logan
Marion
Marshall
Mason
Mingo
Ohio
Putnam
Roane
Summers
Tyler
Wayne
Wyoming
RATE
460
585
401
443
529
441
446
428
431
391
416
484
495
414
404
457
468
420
390
421
455
413
423
457
Prostate Death Rates
No county rates exceed the national rate by
25% or more within the 35-64 age range.
Ages 65+
COUNTY
Mineral
Preston
Wyoming
RATE
297
269
287
Exceeds By:
41%
28%
36%
Exceeds By:
47%
87%
28%
42%
69%
41%
43%
37%
38%
25%
33%
55%
58%
32%
29%
56%
50%
34%
25%
35%
45%
32%
35%
56%
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
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
Process
More cancer
evaluation
control action in
Outcome
Appalachia
evaluation
The Program Mini-grant Model
The “cancer environment” context
State CCCC
coalitions
and plans
recognize and
engage
Appalachian
region
More
interaction
and
interventions
Stakeholder
engagement
and action by
Appalachian
communities in
cancer control
Generate new processes and outcomes:
target needs, demonstrate effects, describe resources
New mini-grant Logic Models
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
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
Comparison of Cancer Mortality Rates by Age
For Appalachian County Rates within Thirteen States
With United States Rates, 1999-2004
Percent of National Rate
for All Cancers
Age at
mortality
Number of six cancers for
which Appalachian rate
is higher than state
Cancers for which rate exceeds
25% of national rate
35-64
65+
35-64
65+
35-64
65+
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
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
States
Cervical
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.