CANCER INFORMATION SERVICE

The Cancer Information Service (CIS) is the National Cancer Institute's link to the public, interpreting and explaining research findings in a clear and understandable manner. Established by the National Cancer Institute in 1975, the CIS uses two primary program components to provide information about cancer; a tollfree telephone service, 1-800-4-CANCER, and an outreach program that works with partner organizations to reach minority and medically underserved populations. Both program components operate on the same principles: responsively tailoring information to audience needs, and proactively sharing information. Each applies these principles to reach audiences ranging from a single individual to large groups. These approaches have been proven to affect behavior change. The telephone service provides individualized, confidential interactions. This one-on-one, tailored interaction allows for responsiveness to the caller's needs. Messages are delivered based on the caller's knowledge. The telephone service complements the work of the health care professional. The outreach program brings cancer information to people who do not traditionally seek health information. Partnerships are built with organizations that have a direct link to underserved and minority communities, providing equal access to cancer information from a trusted source. Composed of a network of 19 regional offices serving all 50 states and Puerto Rico, the CIS is one of the nation's premier laboratories for cancer communications research.

Providing the public with uptodate information about cancer in understandable language, the CIS supports the NCI's commitment to cancer research and helps people become active participants in their own health care. Numerous professional publications inform and educate researchers and the general public on the role of the CIS in cancer communications. The CIS's unique ability to serve the public and act as a leader in cancer control research was highlighted in the August 1998 issue of the Journal of Health Communications. The publication features articles on "Evaluating the CIS: A Model for Health Communications," "Building Effective Partnerships Through the CIS Outreach Program," "Reaching Minority and Underserved Populations Through the CIS Outreach Program," and "The Value and Impact of the CIS Telephone Service."

1-800-4-CANCER. The regional CIS, which has been located at Fox Chase since 1976 and serves eastern Pennsylvania, New Jersey and Delaware, has received a total of 444,045 calls during its 22-year history. In 1998, we received 26,657 calls through the 1-800-4-CANCER telephone service-the majority of which were from Pennsylvania (45.3%) and New Jersey (49.6%) with about 3.3% from Delaware. The public learns about the service through a variety of ways, including family and friends (14.3%), community, health and voluntary organizations (5.8%), NCI publications (6.7%), health professionals (6.8%), telephone directories (9%) and the internet (9.5%). Patients and their families (67.9%) make up the majority of callers to the 1-800-4-CANCER service. Another 14.9% of our callers are considered the general public and about 4.8% of our callers are health care professionals. Only 4.4% of our calls are from people who have symptoms but have not been diagnosed. The CIS is staffed by professional, highly trained Cancer Education Specialists, who hold, at least, a Bachelor's degree or R.N. These certified Cancer Education Specialists address a wide variety of issues including: treatment and side effects, psychosocial support, information on specific cancer sites, screening, diagnosis, clinical trials, and cancer prevention and risk factors. Specialists tailor this information to the individual needs of the caller using a wide array of technical resources such as the NCI's Physician Data Query, NCI fact sheets and publications. As part of our service, we provide referrals and suggestions for follow-up to the call. Cancer Education Specialists can also access our computerized resource directory, which includes over 1,300 national and regional resource listings. The caller may be referred to a medical facility for services or second opinion, provided with behavioral suggestions such as smoking cessation, referred to a community service or to another organization such as the American Cancer Society, or provided with information on or referred to a clinical trial. In 1998, Cancer Education Specialists introduced clinical trials to 1,221 callers to the CIS and they referred to and sent out information on clinical trials to 5,568 callers.

More than 7 million callers have been helped since the CIS began in 1975. Trained, certified Information Specialists answer over 2,000 calls each day, over 600,000 calls each year. The outreach program handles 100,000 requests annually from 4,500 organizations nationwide which are seeking their cancer-related expertise. In 1998, the CIS installed a new, state-of-the-art telephone system to increase access to the CIS. People calling the CIS are now able to hear automated messages about cancer prevention and late breaking news 24 hours a day. Where previously callers only had the options of choosing between ordering publications and talking with an Information Specialist in either English or Spanish, now they can opt for such things as smoking cessation counseling or finding an FDA certified mammography facility. The new system allows callers the option of being routed to the next available Information Specialist network-wide or waiting on hold to speak with a Specialist from the same regional area, which means that callers will rarely receive a busy signal.

OUTREACH PROGRAM. The CIS outreach program is dedicated to reaching the medically underserved, including minority groups and people with limited access to health information and services, using an approach that relies on providing technical assistance to those organizations that are already established and trusted within the community. The CIS provides a variety of services including access to the latest, most accurate cancer information and programs; assistance with coalition building and networking, program planning, implementation and evaluation of cancer control programs; media assistance; training assistance; and, distribution of NCI materials through partnerships with state and regional level organizations reaching underserved populations.

In 1998, the CIS at Fox Chase had 738 contacts with outreach partners including: various state health departments CDC's Breast and Cervical Cancer Early Detection Program (BCCEDP); regional NCI Leadership Coalitions, such as the Appalachia Leadership, Hispanic Leadership and Black Leadership Initiative Coalitions; voluntary health agencies like the American Cancer Society; Health Care Financing Administration; and, medical providers. The outreach staff provided a wide array of technical services such as networking organizations together, disseminating late breaking news and scientific findings, and providing training programs on cancer-related topics. These activities focused primarily on breast and cervical screening and education (37%), tobacco education (12%), science awareness (10%) and clinical trials (14%).

One example of a successful collaboration between the CIS (both outreach and phone service) and a regional partner has been with the Healthy Woman 50+ program, Pennsylvania's BCCEDP. The CIS has been integrally involved since the initiation of the project, reviewing media messages and campaigns, and participating on various task groups. In 1998, the Region 4 CIS at Fox Chase, in conjunction with the CIS regional office at Roswell Park, concluded a 33 month contract with the Pennsylvania Department of Health (PADOH). Through this contract, the CIS became the point of contact for referrals to Healthy Woman 50+. Women who were over the age of 50, un- or under-insured and met the income requirement were eligible for free breast and cervical screening. The CIS referred a total of 1,086 women to the program, 494 of whom called the service in response to HW 50+ advertising and 592 of whom were proactively referred by CIS Information Specialists to the program. In addition to directly referring callers to HW 50+, the CIS has actively promoted the free screening program through outreach efforts at health fairs, trainings and presentations and through specially produced and distributed brochures and pamphlets.

SUPPORT SERVICES. The CIS supports the Division of Population Science investigators and other programs at Fox Chase. The CIS refers potential subjects for research studies to Fox Chase services such as the Smoking Clinic and High Risk Clinic. It implements telephone-based research protocols; provides written materials for study subjects; up-to-date bibliographies and references on cancer topics. The CIS issues reports on the results of efforts involving calls to the telephone service. It also delivers expertise in community outreach. The CIS is an active participant in cancer control research projects. One example, still in early development, is a collaborative research project between the CIS and Psychosocial and Behavioral Medicine Program entitled, "Facilitating Breast Cancer Genetic Counseling through Information, Preparation and Referral." In addition, Mary Daly, M.D., Ph.D. and other members of the Family Risk Assessment have been instrumental in the design of the intervention to be used by CIS Information Specialists. The CIS at Fox Chase is also a site for an NCI sponsored and funded Program Project Grant. Under the leadership of Al Marcus, Ph.D. at AMC Cancer Center, the CIS at Fox Chase will participate in Calling it Quits, a project which will test for the efficacy and cost effectiveness of using tailored print materials to promote smoking cessation.

The overall goal of this pilot program was to increase the utilization of screening mammography services among women aged 65 and over who attended four senior centers (the Center in the Park, Haddington Multi Services for Older Adults, Martin Luther King Older Adult Center and Southwest Senior Center) sponsored by the Philadelphia Corporation for the Aging (PCA). The primary goals of this initiative were for Fox Chase staff to develop and implement a breast cancer education program and provide onsite screening mammography services using the Fox Chase mobile mammography van.

From February through June 1998, program activities included: 1) conducting a baseline mammography survey which asked questions relating to frequency of mammograms, locations of mammography facility and insurance coverage, 2) implementation of "Miss Ruby," an informative 45 minute education session including a 20 minute audience participatory skit, woman to woman group discussion and follow-up questions and answers, 3) two days of on-site registration and ongoing telephone registration (42 registrations or inquiries) via the Fox Chase telephone number, and 4) on-site mammo-graphy screening using the Fox Chase mobile mammography van. All women screened, and their identified primary care providers, received a letter from Fox Chase with the mammogram results. Women with an abnormal mammogram were contacted by telephone to encourage appropriate follow-up.

Thirty-six women participated in focus groups for this pilot. One hundred and seventy one completed the baseline survey. One hundred and seven seniors attended the educational sessions and another eighty-eight received on-site mammograms. This pilot program demonstrated that elderly women will utilize mammography sites with the following characteristics: 1) convenience to home, 2) a familiar staff, 3) it is "user-friendly" and 4) it treats them with respect and dignity. Moreover, because of their experiences with the program, the women involved viewed Fox Chase in a positive and favorable light. As one participant from Center in the Park remarked, "If I ever need the services of a cancer center, I'm going to Fox Chase."

In 1997, Fox Chase received a one year grant from the AVON corporation entitled, "Avon Kids Care Program." The program, "Burlington City Home Visitation Project for Breast Health," was implemented via a collaborative effort with Heureka Center for Disease Prevention and Health Promotion (HCDPHP), a community based organization in southern New Jersey. We developed a customized approach to educating medically underserved women about breast cancer screening and recruiting them to receive such screening. This approach relies on lay health outreach workers who are indigenous to the community to provide in-home breast health education and to encourage women to seek screening. What is unique about this effort is that it brings together the expertise of an academic oncology institution and a community-based organization to reach women who are at risk for developing breast cancer, but who, historically, do not seek out screening services. The program's goal is to provide education to more than 100 women and to provide screening for 60 eligible women. We have exceeded our goals for the education segment of the program. Preliminary figures show that 143 of the 191 homes visited received general breast health education, and 118 of the 143 received, not only general education, but, BSE demonstration and instruction by way of breast models and videos. Another 35 women were educated outside the home in general breast health. To date, the program has screened 32 women at the Heureka Center, 9 of which had abnormal mammograms. There is one remaining screening date scheduled. The project will end in March of 1999.

BOYD, N.R., SUTTON, C., ORLEANS, C.T., McCLATCHY, M.W., BINGLER, R., FLEISHER, L., HELLER, D., BAUM, S., GRAVES, C., WARD, J. Quit Today! A targeted communications campaign to increase use of the Cancer Information Service by African American smokers. Prev. Med. 27:S50--S60, 1998.

ORLEANS, C.T., BOYD, N.R., BINGLER, R., SUTTON, C., FAIRCLOUGH, D., HELLER, D., McCLATCHY, M., WARD, J., GRAVES, C., FLEISHER, L., BAUM, S. A self-help intervention for African American smokers: Tailoring Cancer Information Service counseling for a special population. Prev. Med. 27:S61--S70, 1998.

DAVIS, S., FLEISHER, L., TER MAAT, J., MUHA, C., LAEPKE, K. Treatment and clinical trials decision making: Impact of the Cancer Information Service. Part 5. J. Health Commun. 3:71-85, 1998.

FLEISHER, L., WOODWORTH, M., MORRA, M., BAUM, S., DARROW, S., DAVIS, S., SLEVIN-PEROCCHIA, R., STENGLE, W., WARD, J. Balancing research and service: The experience of the Cancer Information Service. Prev. Med. 27:S84--S92, 1998.

FLEISHER, L., KORNFELD, J., TER MAAT, J., DAVIS, S., LAEPKE, K., BRADLEY, A. Building effective partnerships: Impact of the Cancer Information Service Outreach Program. Part 2. J. Health Commun. 3:21-35, 1998.

KORNFELD, J., FLEISHER, L., TER MAAT, J., VANCHIERI, C., HOHENEMSER, L., RIVERA, N. Reaching minority and underserved populations: Impact of the Cancer Information Service Outreach Program. Part 3. J. Health Commun. 3:36-49, 1998.

^§   Fox Chase researcher

Illustrations or unpublished data in these reports should not be used without permission of the author.

Fox Chase Cancer Center

Scientific Report 1998