Let’s Talk: The Story of Community/State Cancer Coalition Partnerships and Cooperation

Joellen Edwards, PhD, RN, FAANandKristine Harper BowersEast Tennessee State University

Rural Health Association of Tennessee Conference November 2013

Program Goal:

Encourage connection, interaction and engagement among Appalachian communities and state CCC programs and coalitions

Comprehensive Cancer Control Plan Implementation in Appalachian Communities

Interagency Agreement (2006-present)◦CDC’s Division of Cancer Control◦Appalachian Regional Commission

Followed prior work (2001-2006) ◦ETSU and University of Kentucky

identified personal, community and cultural factors influencing cancer care

◦ARC supported 2004 WVU study to document Appalachian health disparities

Partners in Cancer ControlComprehensive Cancer Control Program

◦Sponsored by CDC◦Encourages and supports relationships that

will reduce the cancer burden◦Organized and facilitated throughout state

by Manager or Director and staffCancer Control Coalitions

◦Representatives from organizations throughout the state

◦Organized, but more independent and fluid◦Plays various roles

Overview of the Program

1. Community Cancer Control in Appalachia Forum

2. Roundtables & Forums – and Storytelling

3. Special Topics – and more Storytelling

4. Review & Share Information

Advisory Group◦Kentucky, North

Carolina, Tennessee, Virginia, & West Virginia (and Atlanta & Washington DC)

◦American Cancer Society, State Depts. of Health, other community-serving agencies

Data gathered during each phase of Program

Phase One: Community Cancer Control in Appalachia Forum 2007

Two-day meeting with leaders from Appalachian communities and state CCC representatives◦60 Participants◦10 States

Discussed “Authentic Appalachia”Identified facilitators and barriers

to implementation of cancer control plans

Findings: Authentic Appalachian Culture

1. Cancer is perceived as a community disease

2. Strong sense of family pride and connectedness

3. Self-reliance4. Social awareness-

active community members

5. Sense life priorities

6. Generally religious

7. Rooted in the Mountains

8. Believe environment is major influence

9. History of experience with cancer

10. Oral culture

Facilitators and Barriers

What characteristics are common in these communities and states?

How do these characteristics make it easier (or harder) to improve partnerships for cancer control?

Findings: Appalachian Characteristics

Storytelling is pervasive (people do it; people love it)

Communities self-identify as “rural”◦Suspicious of outsiders◦Rely on internal networks◦Lack important healthcare access

Serious concern about impact of environment on health

Findings: Initial Thoughts on Improving Partnerships for Cancer Control

Storytelling may be an effective strategy to engage communities

Locally known and respected leaders must be involved

Local health care providers can play a key role

Environmental concerns can’t be ignored

Phase Two: Roundtables and ForumsRoundtable: A data-driven

discussion of needs and resources◦19 roundtables, 7 states◦Mini-grants of up to $2,500

Forum: A full-day meeting with data, best practices, needs and resources, and plan development◦9 forums, 7states◦Mini-grants of up to $5,000

2009 Forums and Roundtables

– and Storytelling

Storytelling: A community-driven project to discover and tell community cancer story◦3 Communities, 2 States◦$4,000 mini-grants

Examples: Roundtables in Tennessee

Cancer in Tennessee: Appalachian Roundtable Discussion◦ Sponsored by RHAT◦ Partnered with TN CCC

Program◦ Held in Pigeon Forge◦ Involved local officials

from Appalachian counties

Komen Tri-Cities Community Assessment◦ Blountville◦ Rogersville

Tobacco and Cancer in Appalachian Tennessee◦ Sponsored by RHAT◦ Partnered with TN CCC

Coalition, TN Cancer Registry, UT Extension Service, Mercy Health Partners

◦ Focused on Appalachian counties with particularly high lung cancer rates

◦ Held in Knoxville

Examples: Forums in TennesseeFACTS Forum

◦Held in Chattanooga Also involved outlying communities

◦Sponsored by Southside Dodson Community Health Center

◦Partnered with Southeast TC2 and Servant Leadership Christian Fellowship

◦African American communities of faith

RHAT ContributionRoundtable: November 21, 2008,Pigeon Forge44 attendees from 16 counties:

Coordinated School Health staff, breast cancer educators, county mayor, health council, survivors, health department, insurance company outreach, parish nurses, UT Extension agent

Outcomes: Data shared, data collected, state CCC plan shared, new objective added, new coalition, new members, more RHAT exposure

RHAT Contribution

Forum: Cancer in Appalachia, August 4-5, 2009 in Johnson City

Co-sponsored with RHATRoundtable: Tobacco and Cancer

in Tennessee November 2009, Knoxville

Co-sponsored with RHAT

Report to RHAT November 2011 in Pigeon Forge

Knowledge Gained from Roundtables and Forums

Much can be accomplished with “little” money

Coalitions gained new members and forged useful partnerships

Some states adjusted their Cancer Plans to reflect priorities from these events

Mini-grant model findings published“Toolkit” would be needed as a guide

to aid communities

Phase Two: StorytellingThree Story Projects

◦Voices of Light Blue Ridge Healthcare, Morganton, NC Survivorship Produced video of vignettes http://youtu.be/Ja7aRmcn8Ks

◦Our Never Ending Stories Wetzel County Cancer Coalition, WV What it’s like to be diagnosed and treated for cancer Slide show with audio-recorded stories broken into

phases

◦Hope’s Café Webster Springs United Methodist Church, WV Remote location affects every aspect of cancer Live performance play

Webster Springs, West Virginia

Home of Hope’s Café

Project Director: Jean Tenney

Much Thanks to the First United Methodist Church of Webster Springs, and the Webster County Cancer Coalition!

Voices of LightMorganton, Burke County, NC

A Story of Hope, Humor, Gratitude, Joy, Service, and Never-ending Faith

https://www.youtube.com/edit?video_id=vNZ-AUWoXVM&ns=1&o=U

Knowledge Gained from Phase 2 Storytelling is major

◦Effective◦Community members can participate◦Inherently Appalachian

communication styleRecurring questions and concerns

raised in Roundtables and Forums

Phase Three: Special Topics – and Storytelling

Roundtables – Targeted

Special Topics of interest to communities – narrowed to 5

Storytelling – 8 communities, enhanced training and support

Special Topics: Questions to be Answered1. How is storytelling used to

communicate in cancer programs?2. Why do some physicians and direct

health care providers get involved in CCC?

3. How do cancer navigation models work?

4. Why do mobile screening units work?5. How can we communicate both the

environmental and lifestyle risk factors associated with cancer?

Special Topic Findings: Engaging Health Care Providers

Motivators included personal interest and connection

Personal requests from community or organizational leaders encourage provider involvement◦Especially if it comes from someone higher

up◦ Institutional support is critical

Effective use of time and communication is important

Opportunities for funding are helpful

Special Topic Findings: Mobile Screening UnitsMobile screening is not new to AppalachiaDriven by desire to increase access to

screeningWarm, friendly, non-judgmental staff influence

success of a unitEngagement with CCCs and State Cancer Plans

may increase effectivenessUnits usually owned/operated by a single entity

◦ Follow-up care generally happens within operator’s healthcare system

◦ Need for increased support as some users fall through cracks

Cost is a barrier to long-term use

Special Topic Findings: Cancer NavigationThere are a lot of different models

being usedNavigation is expanding beyond

“patient navigation”Increased interest and support to

develop an Appalachian Navigator Network◦Enhance navigation across

system/state lines◦Develop evaluation tools◦Improve networking

Special Topic Findings: The Intersection of Environmental and Lifestyle Risk FactorsThe two “sides” do not interactFacilitating and continuing the

conversation is important to success of cancer control

Common language and focus is critical◦Do NOT use jargon◦Do NOT marginalize participants

Continuing dialogue requires long-term commitment

Special Topic Findings: StorytellingStorytelling projects were identified

in all 13 statesPrimarily used for coping and supportSometimes used to encourage

screeningMuch storytelling is unofficial and

informalFormalized support and assistance

viewed as helpful, but projects wanted to maintain autonomy

Phase 3: Storytelling - Expanding the Scope

8 Communities (7 states)◦6 communities completed project

Two days of training◦Story circle methodology (Roadside

Theater)◦Advanced skills (Stage performance

and digital technology)Mini-grants of $4,000

◦Production expenses◦Travel to share with CCC

Phase 3: Storytelling Products

Live performance (also recorded on DVD)

Video recorded performance (also live-adapted)

Two stages: slide show with audio; live performance

Produced/edited videoTwo groups continued the project

◦Photography-based◦Live performance

Examples: Storytelling in Tennessee

Survive & Thrive Cancer Support Group◦Sponsored by Wellmont Foundation (Tri-Cities)◦Focus on survivorship and role of support group◦Short Video: DVD and Facebook (

http://www.facebook.com/video/?id=113177211278)

This is My Story, This is My Song◦Southside Dodson Community Health Center

(Chattanooga)◦Focus on breast and prostate cancer to

encourage screening in African American community

◦DVD video

Phase Four: Review, Share, Disseminate Information

ToolkitsRoundtable and Forum ToolkitStorytelling ToolboxEnvironmental/Lifestyle Toolkit

DisseminationWebsite: http://www.etsu.edu/nursing/ccc/Marketing planPresentations and publications

Toolkit Example

A Toolkit forDeveloping Events to Connect State Comprehensive

Cancer Control Coalitions and Programs with Underrepresented Geographic Areas

Get the Conversation Started!

The Tool Kit “How To” ModelUsing this Model Will Engage state and

local peopleBroaden

involvementBe a starting point

and guide postDevelop short-

term, achievable tasks

Using this Model Won’t Solve cancerForce people to be

involvedChange past

difficultiesBecome an annual

activityBe a specific roadmap

Example: Toolkit Contents

◦ Develop Your Idea Assess Need Identify Partners

◦ Plan and Implement Agenda Development Recruitment Budget Logistics

◦ Evaluation Measurable Goals Stakeholder Needs Linking to Logic Model

◦ Partnerships◦ Outcomes and

Outputs◦ Lessons Learned◦ Give/Get Grid◦ 5 Questions

Overview ◦ Introduction and History

Tools

Conclusions

Toolkit: Give / Get GridCCC Coalitions &

ProgramsCommunities & Organizations

CCC can expect to give Partners can expect to give

Gives

•Present cancer incidence and mortality data•Statewide communication network

•Access and connections to local leaders and culture•Examples of successful implementation strategies

CCC can expect to get Partners can expect to get

Gets•Improved regional networks and contacts•Identification of strategies and factors that promote cooperation

•Reliable information about the cancer rates in their region•Access to cancer education, resources, and technical assistance

Toolkit: Sharing Lessons LearnedSmall investments matterLocal success = local advocateNew information leads to new ideasTime is of the essenceBe clear, be transparent, be flexibleLocal resources are limitedLocal views of causes and solutionsContinuity is important

What Makes This Work?Seven Years and Counting

Unique Characteristics Interdisciplinary Team

◦ Public Health◦ Communication◦ Nursing

Multiple Modes of Engagement◦ Formal inquiry◦ Mini-grants◦ Training◦ Contracted projects◦ Hands-on

Engaging Different Kinds of People◦ Administrators◦ Healthcare providers◦ Volunteers◦ Academics

Engaging Different Kinds of Organizations◦ State CCC Coalitions &

Programs◦ Local affiliates of

national Organizations◦ Community-based

organizations◦ Churches, universities,

healthcare organizations

◦ Individuals Active Listening!! Some people do this

for a “living”, some people “live” by doing this.

Unique OutputsManuscripts

◦Publications, TopicsTools

◦Toolkit, Toolbox, Tools ◦Media

ReportsPresentationsGiving an extra nudgeTargeted audienceConnecting people

Overall Project AchievementsRoundtables and Forums, Special Topics,

StorytellingEvents in 11 statesState CCCs as partnersGamut of local organizations involvedFlexible formatsThousands of people potentially touched

by projectTargeted to community needs

◦Cancer types◦Population◦Best practices

Publications and Presentations

Presentations to Tennessee Rural Health Association, Tennessee State Legislature, national CCC

meeting, et al.11 Publications, recent examples:

Blackley, Behringer & Zheng (2012)Cancer mortality rates in Appalachian: Description epidemiology and an approach to explaining difference in outcomes, Journal of Community Health

Bounds, Bumpus & Behringer (2011) The minigrant model: A strategy to promote local implementation of state cancer plans in Appalachian communities, Preventing Chronic Disease.

Behringer & Krishnan (2011) Understanding the Role of Religion in Cancer Care in Appalachia, Southern Medical Journal

The path continues…

Dr. Joellen Edwards edwardsj@etsu.edu

Kristine Harper Bowers Bowersk@etsu.edu

East Tennessee State University College of Nursing423 – 439 – 4082