Lets Talk: The Story of Community/State Cancer Coalition Partnerships and Cooperation Joellen Edwards, PhD, RN, FAAN and Kristine Harper Bowers East 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) CDCs Division of Cancer Control Appalachian Regional Commission Followed prior work ( ) 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 Control Comprehensive 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 staff Cancer 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-reliance 4. 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 cant be ignored

Phase Two: Roundtables and Forums Roundtable: 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 Tennessee FACTS 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 Contribution Roundtable: November 21, 2008,Pigeon Forge 44 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 RHAT Roundtable: 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: Storytelling Three Story Projects Voices of Light Blue Ridge Healthcare, Morganton, NC Survivorship Produced video of vignettes Our Never Ending Stories Wetzel County Cancer Coalition, WV What its like to be diagnosed and treated for cancer Slide show with audio-recorded stories broken into phases Hopes Café Webster Springs United Methodist Church, WV Remote location affects every aspect of cancer Live performance play

Webster Springs, West Virginia Home of Hopes Café Project Director: Jean Tenney Much Thanks to the First United Methodist Church of Webster Springs, and the Webster County Cancer Coalition!

Morganton, Burke County, NC A Story of Hope, Humor, Gratitude, Joy, Service, and Never-ending Faith AUWoXVM&ns=1&o=U

Knowledge Gained from Phase 2 Storytelling is major Effective Community members can participate Inherently Appalachian communication style Recurring 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 Answered 1. 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 Units Mobile screening is not new to Appalachia Driven by desire to increase access to screening Warm, friendly, non-judgmental staff influence success of a unit Engagement with CCCs and State Cancer Plans may increase effectiveness Units usually owned/operated by a single entity Follow-up care generally happens within operators healthcare system Need for increased support as some users fall through cracks Cost is a barrier to long-term use

Special Topic Findings: Cancer Navigation There are a lot of different models being used Navigation 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 Factors The two sides do not interact Facilitating 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: Storytelling Storytelling projects were identified in all 13 states Primarily used for coping and support Sometimes used to encourage screening Much storytelling is unofficial and informal Formalized 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 video Two 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 ( 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 Toolkits Roundtable and Forum Toolkit Storytelling Toolbox Environmental/Lifestyle Toolkit Dissemination Website: / Marketing plan Presentations and publications

Toolkit Example A Toolkit for Developing Events to Connect State Comprehensive Cancer Control Coalitions and Programs with Underrepresented Geographic Areas Get the Conversation Started !

The Tool Kit How To Model Using this Model Will Engage state and local people Broaden involvement Be a starting point and guide post Develop short-term, achievable tasks Using this Model Wont Solve cancer Force people to be involved Change past difficulties Become an annual activity Be 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 Grid CCC Coalitions & Programs Communities & Organizations CCC can expect to givePartners 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 getPartners 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 Learned Small investments matter Local success = local advocate New information leads to new ideas Time is of the essence Be clear, be transparent, be flexible Local resources are limited Local views of causes and solutions Continuity 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 Outputs Manuscripts Publications, Topics Tools Toolkit, Toolbox, Tools Media Reports Presentations Giving an extra nudge Targeted audience Connecting people

Overall Project Achievements Roundtables and Forums, Special Topics, Storytelling Events in 11 states State CCCs as partners Gamut of local organizations involved Flexible formats Thousands of people potentially touched by project Targeted 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 Kristine Harper Bowers East Tennessee State University College of Nursing 423 – 439 – 4082