The ACCN Appalachian Cancer Scholars Program

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1 ISSUE 1 FALL 2011 APPALACHIA COMMUNITY CANCER NETWORK Addressing the cancer burden in Appalachia ACCN Research Seminar: Addressing Cancer Health Disparities Among Women in Appalachia The Addressing Cancer Health Disparities among Women in Appalachia Research Seminar was conducted on May 5th in Dublin, Ohio. The research seminar kicked-off with an opening presentation The Promise of a Cancer Free World: Where are We? delivered by Dr. Electra Paskett, ACCN- Ohio Regional Principal Investigator at the Ohio State University (OSU). This compelling presentation provided a historical perspective about accomplishments in cancer prevention & control and set the stage for the rest of the seminar. The day also included presentations from the ACCN-Virginia and ACCN-Kentucky regional sites including Dr. Karen Roberto from Virginia Tech and Dr. Nancy Schoenberg from the University of Kentucky. Dr. Roberto highlighted her research examining how rural women with chronic health conditions interpret their own health. Dr. Schoenberg s presentation focused on the key influences that determined follow-up care for women with abnormal Pap test results. The community presentations were delivered by members of two ACCN- Ohio coalitions including Ms. Sharon Carver from the Fight Cancer Save Lives Coalition and Ms. Bridget Spencer from the Partners of Hope Cancer Coalition. Ms. Carver shared insights on the role of faith as part of the cancer experience and the power of storytelling among cancer survivors. Ms. Spencer s presentation described the collaborative partnership with ACCN and local agencies to establish a women s colposcopy clinic in a tri-county Appalachian Ohio region with elevated rates of cervical cancer. Additional academic presentations addressed: health literacy issues by Dr. Sharon Denham, Ohio University; elevated intake of sugar sweetened beverages by Dr. Laureen Smith, OSU College of Nursing; and the development of a communication tool among breast cancer survivors by Dr. Doug Post, OSU. The program evaluations indicated that the seminar was successful in featuring research topics of interest and increasing knowledge of cancer health disparities among women in Appalachia. This seminar was made possible through funding from the National Cancer Institute (NCI) and the Ohio State University Comprehensive Cancer Center. The ACCN Appalachian Cancer Scholars Program The Appalachian Cancer Scholars Program is the training component of the Appalachia Community Cancer Network. The goal of the program is to build a critical mass of scientists and health professionals to be the next generation of investigators using community-based participatory research (CBPR) to reduce the cancer burden in Appalachia. The program is co-led by regional principal investigators Eugene J. Lengerich, VMD, MS, ACCN Pennsylvania and Karen Roberto, PhD, ACCN-Virginia. The research interests of these scholars vary widely and include adult education, clinical trials, obesity and nutrition, concurrent diabetes and cancer among Latinos, signaling pathways and cell cycles in breast cancer, genetic-familial risk and genetic counseling, telephone counseling for cancer prevention and survivorship, health communication, and social influences in health and cancer disparities. Despite the variability in research interest, they all share the same passion: to reduce the cancer burden for people of Appalachia. Training activities that are planned for the scholars include structured didactic and mentored training in CBPR, cancer health disparities, and Appalachian history and culture and how they relate to cancer. The scholars will also have the opportunity to participate in the fouryear, ACCN-wide project with churches to promote healthy eating and physical activity, and also develop grant-writing skills by submitting applications to the NCI and other potential funders. ACCN Scholars Penn State University Betsy Aumiller, DEd Oralia Dominic, PhD Brenda Kluhsman, PhD West Virginia University Susan Coyle, PhD Kim Kelly, PhD University of Kentucky Kelly Webber, PhD Ohio State University Janice Krieger, PhD Randi Foraker, PhD Virginia Tech Carla Finkielstein, PhD

2 ACCN COMMUNITY OUTREACH PROGRAM Community Coalitions and Partners: Key to Our Success The Appalachia Community Cancer Network continues to work closely with community coalitions and partners to accomplish outreach, training, and research objectives. From structured focus groups to community advisory boards to quiet conversations in the corner of a fire hall, community members from all walks of life guide the work we do. Due to changing grant requirements we are not always as visible at monthly meetings and events as we once were, but are always available to provide technical assistance and work on specific projects. In an effort to stay connected, we have developed a list serve to quickly disseminate training and funding information. We are exploring digital media opportunities and networks and will be rolling out a Facebook page in the near future. We understand the key to our success as a network rests in our relationships with community coalitions and partners; we honor and thank those who guide us. Eliminating the unequal cancer burden is the key theme in cancer prevention and control. Ten Values Common to Appalachians Individualism Religion Neighborliness and Hospitality Family Solidarity Personalism Love of Place Modesty and Being Oneself Sense of Beauty Sense of Humor Patriotism Aims of the Community Outreach Program Engage the Appalachian community to identify, design, and implement community-based health disparity assessments, interventions, programming, and evaluations Identify existing materials and create others for Appalachian populations Integrate a Community Health Educator and National Outreach Network with ACCN Assist in the identification of grant opportunities and provide technical assistance for community projects Disseminate evidence-based information for reducing disparities to community members, health care providers, and policy makers at the local, state, and federal levels To join the ACCN list serve, please send your name, address, and address to Mary Ellen Conn at: meconn@hsc.wvu.edu.

3 ACCN COMMUNITY HEALTH EDUCATOR ACCN and National Outreach Network: Working Together to Address Cancer Health Disparities As a National Cancer Institute (NCI) Community Networks Program, the Appalachia Community Cancer Network (ACCN) is committed to reduce the cancer burden in the Appalachian region. With the new format of the grant comes an opportunity to integrate ACCN activities with other NCI programs. The NCI s National Outreach Network (NON) is a multidisciplinary program that bridges NCI-supported outreach and community education efforts with cancer health disparities research and training programs. This will be done through a Community Health Educator (CHE), a shared position between ACCN and NON, who works as a liaison among the researchers, partners, and community to identify areas of need, and develop, adapt, and disseminate health promotion and cancer education materials that are specific to their residents. The ACCN CHE, Mary Ellen Conn, is housed at West Virginia University and works with ACCN regional staff to ensure that NCI resources and programs reach the Appalachian community, and that the needs and voice of the Appalachian community reach NCI. With the help of regional ACCN staff and community partners, the CHE is completing an educational resource assessment of national and locallydeveloped materials that are appropriate for use with our communities. NATIONAL OUTREACH NETWORK Research Enterprise National Outreach Network Community Build and Sustain a Network for Education, Outreach, and Research Dissemination in At-Risk and Underrepresented Communities ROLE OF COMMUNITY HEALTH EDUCATORS Liaison between community, site and NCI Community coach and teacher Bring community voice to research enterprise Conduct community outreach and education Support screening, prevention, biospecimen collection, and clinical trials Empower community and influence behavior change (KAB) CHE and NCI-Coordinated Activities Disseminate NCI messages, programs, information, and research opportunities Increase awareness and foster adoption of NCI recommendations on cancer prevention, early detection, and treatment Disseminate culturally appropriate, evidence-based information and education materials on cancer prevention and treatment, including clinical trials Use new and innovative technology, such as Twitter, RSS (Really Simple News Syndication), and social media, to increase exposure to NCI messages in the community Build liaison relationships with other NCI-supported programs Contact the CHE at or meconn@hsc.wvu.edu See how ACCN and the CHE are working with community partners. Check out our YouTube video at

4 ACCN COMMUNITY ADVISORY COMMITTEE Our six member Community Advisory Committee continues to be a valuable resource to ACCN staff and investigators throughout the five state region. A strong community voice is vital to understanding cancer health disparities from the local perspective. Advisors provide critical input on community needs, interests, and values. The committee is composed of lay community members, including cancer survivors, public health workers, and health and social system providers. Marcia Anderson is the Executive Director of Lifelong Learning Choices, in New Castle, Pennsylvania. Along with the Lawrence County Cancer Coalition, she sees herself as an advocate for the underserved and strives to bring information and outreach to the disenfranchised. Marcia has a strong interest in health literacy. Marcia serves as a board member of the Pennsylvania Association for Adult and Continuing Education and Lawrence County Minority Health. David Reese is an epidemiologist with the Kentucky River District Health Department in Hazard, KY. He works to connect ACCN-Kentucky to the local health department and bring what he learns through ACCN back to his community, including his faith community. David is active in the Breathe Easy Perry County Partnership, an advocacy group focused on the Rural Smoke-free Communities Project along with the University of Kentucky. He is a recent cancer survivor. Ann Duesing is an outreach librarian at University of Virginia Health Sciences Library in Wise, VA and an advisor for ACCN-Virginia. She worked closely with Mountain Empire Older Citizens, Inc. to develop the Mountain Laurel Cancer Resource and Support Center to bring information and direct services to cancer survivors in the Big Stone Gap area. Ann was instrumental in securing financial support through the Library of Medicine to offer the most up-to-date information about different types of cancer, cancer prevention, cancer screenings, cancer treatments, and cancer research through the CancerHelp database. She has also explored ways to use storytelling in cancer education. Co-advisor for ACCN-Virginia, Nila Saliba, Coordinator of the Every Woman's Life Program and Cancer Outreach, works at the University of Virginia Cancer Center. As an active member of Virginia's Cancer Plan Action Coalition, she coordinated seven community cancer forums across the state including two in the Appalachian region. Recently the state cancer coalition, ACCN-Virginia, and local cancer coalitions coordinated a multi-site distance education program to train community leaders to conduct education programs about cancer clinical trials. Courtney Midkiff is the Assistant Administrator with the Meigs County Health Department in Pomeroy, OH. In this role, she coordinates the Adult Health Clinics and Services, Immunization Clinics for Children and Adults and the Ferman E. Moore American Cancer Society Meigs County Cancer Resource Center. She is the past chair of the Meigs County Cancer Initiative, Inc. and continues to serve on the Executive Board. As a member of the coalition, she coordinates the transportation assistance program for local cancer survivors. In addition, she also works closely with the American Cancer Society on local projects. Kathy Helmick is a Cancer Information Specialist with the West Virginia (WV) Breast and Cervical Cancer Screening Program for the WV Bureau for Public Health. As a 7 year breast cancer survivor, her goals are to save lives by: promoting the message about early detection to underserved, uninsured and under-insured WV women; assisting WV women to access screening services; and providing technical assistance to screening providers in her region. She is an active member of the Early Detection Committee of the WV Mountains of Hope Cancer Coalition and Appalachia Community Cancer Network Community Advisory Committee. Marcy Bencivenga, ACCN-Pennsylvania, is a liaison between advisors and investigators providing staff support to the Community Advisory Committee.

5 ACCN RESEARCH PROJECT: Faith-based Initiative to Promote Health in Appalachia ACCN Partnership with the Faith Community in Appalachia The Appalachia Community Cancer Network (ACCN) is partnering with churches across the Appalachian region of Kentucky, Ohio, Pennsylvania, Virginia and West Virginia to implement the Faith-Based Initiative to Promote Health in Appalachia project. This initiative will utilize the strengths of the faith-based community to promote health and raise awareness about cancer prevention and early detection. Through past projects, ACCN found collaborations with the faith community to be an effective way to reach a variety of community members including men and women of all ages, individuals, and families. This newly funded project will enable ACCN to conduct a large-scale research project in 20 churches across five states to examine the effectiveness of this approach. Through participating in this project, individuals will receive some wellness information, assessments, and health education by local experts. Ongoing encouragement by church leaders, project staff and volunteer church navigators will support participants efforts to improve lifestyle behaviors in meeting established health and screening guidelines to reduce their risk for cancer. This project will be implemented, as follows: Half of the churches will initially receive the Walk by Faith educational program to increase healthy eating and walking among participating church members. The other half of the churches will initially receive the Ribbons of Faith educational program to help church members make informed decisions about cancer screening tests for breast, cervical, colorectal, prostate and skin cancer based on their age and risk factors. All churches will have the opportunity to participate in both programs by the end of the project. After each church completes their initially assigned program and both programs have been evaluated and revised, members will be offered the opportunity to receive the other program. This project will start in Ohio and Pennsylvania in Winter of 2012, followed by Kentucky, Virginia & West Virginia in Fall of The active part of each educational program will last 12 months. After the conclusion of the active part of the educational program, an annual assessment will be conducted through August 2015 to collect information from participants about dietary intake, physical activity, and cancer screenings, along with measured height, weight and blood pressure.

6 IN THE NEWS Losing Even a Little Weight Can Reduce Cancer Risk Being overweight or obese significantly increases risks of many common types of cancer, but experts now suggest that losing even a small amount of weight can improve your health. More than 60 percent of American adults are overweight or obese. The U.S. Surgeon General's office states that being overweight or obese increases the risks for many types of cancer, including cancer of the endometrium (the lining of the uterus), colon, gall bladder, prostate, kidney and post-menopausal breast cancer. The American Cancer Society suggests that being overweight may also increase risks of developing cancers of the pancreas, gallbladder, thyroid, ovary, and cervix, as well as multiple myeloma, Hodgkin's lymphoma, and aggressive prostate cancer. Fat cells produce estrogen, which promotes cell growth. They also make a variety of proteins that cause inflammation and insulin resistance, which can promote cell growth and reproduction. People who tend to be "apple-shaped" have even more fat activity, because fat cells around the middle of the body divide even more rapidly. The faster the cells divide, the higher the risk of developing cancer. Some experts believe that children who are overweight or obese have a higher risk of developing cancer later on in life than when they become overweight as adults. But there's good news: The National Cancer Institute states that "even a weight loss of 5 to 10 percent of total weight can provide health benefits." Taken From Karina Christopher Lexington Herald-Leader contributor, May 22, 2011 The ACCN News is a biannual publication with support from NCI Grant# U54 CA For more information, visit CONTACT U S ACCN Central Office University of Kentucky Mark Dignan, PI CC444 Roach Building 800 Rose Street Lexington, KY mbdign2@ .uky.edu Regional Offices University of Kentucky Nancy Schoenberg, PI nesch@uky.edu Ohio State University Electra Paskett, PI electra.paskett@osumc.edu Penn State University Eugene Lengerich, PI elengerich@psu.edu Virginia Tech Karen Roberto, PI kroberto@vt.edu West Virginia University Stephenie Kennedy, PI skkennedy@hsc.wvu.edu