Member Case Study

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The world of cancer information

This is one of a series of articles featuring how members of the International Cancer Information Service Group (ICISG), have been helping each other set up and improve their communication services.

MUTUAL SUPPORT KEEPS CANCER INFORMATION SERVICES CONNECTED THROUGHOUT THE WORLD

This article discusses the relationship between the CIS in Germany and the CIS in the United States, one example of the interconnections among the World's CISs.

When Hilke Stamatiadis-Smidt, Director of Press and Public Affairs at the German Cancer Research Center traveled to the United States from Heidelberg, Germany in 1982 to attend the UICC International Congress in Seattle, she was in search of information to fulfill an optimistic idea: to improve access to information about cancer to all people in Germany. At the conference, she attended a presentation by Paul Van Nevel, Associate Director for Cancer Communications at the National Cancer Institute (NCI). In 1975, Van Nevel was a main architect in creating the NCI's Cancer Information Service (CIS) in the United States. Stamatiadis-Smidt and Van Nevel forged an immediate link. After visiting offices at the cancer centers in Seattle, Buffalo and New York, Hilke Stamatiadis-Smidt returned to Germany determined to start a European initiative and develop a national telephone service bases on the model of the CIS. An invitation was extended for her to visit the NCI's national CIS office and more of its regional counterparts - a practice that the NCI has performed many times since with other countries in the world.

Thus started a 20-year partnership, which has evolved from the sharing of technical and practical information to the establishment of a scholarship, allowing travel exchanges between colleagues in the CIS offices in these two countries.
Stamatiadis-Smidt returned with Monica Preszley (now the current manger of the German CIS) for indepth visits to NCI to see firsthand how the CIS operated from a national level and to the cancer centers at Memorial Sloan Kettering in New York City and at the Yale Medical School in New Haven, Connecticut, both of which were running regional CIS offices under contract with the NCI. There she was introduced to the day-to-day demands of a busy office, providing quality medical information on a one-to-one basis. With procedures, forms, resources and other information in hand, Stamatiadis-Smidt and Preszly returned to Germany and, under the auspices of its government, founded the national German CIS office, Krebsinformationdienst - KID - at their parent institution, the German Cancer Research Center in Heidelberg.

Stamatisdis-Smidt patterned KID after the U.S. CIS service and became its first director. Subsequent yearly exchange visits, usually centered around the U.S. CIS Annual Meeting of its regional project directors and management staff or the UICC or European CIS meetings, have furthered the relationship. All of these activities resulted in shared learning and information and bridging the challenges of culture, language and service delivery.

In 1997, Stamatiadis-Smidt, who has a long-standing commitment to cancer information and education and the networking of CIS programs throughout the world, conceived the Annelies-Schleich Scholarship to continue the exchange and collaboration between the German and U.S programs. This scholarship is named in honor of Dr. Annelies Schleich, the first woman director of a department at the German Cancer Research Center, KID's parent institution. Upon her retirement, Dr. Schleich was the first volunteer information specialist at KID. She died in 1990 at age 76 of breast cancer.

The scholarship, made available by the German Cancer Research Center, KID and Eli Lilly-Europe, allows CIS staff from both countries to visit and exchange information on technology, staffing and training. It fosters meetings with local CIS counterparts, an opportunity to explore in detail the similarities and differences of their respective programs. These annual travel stipends also are means for staff in each country to attend and make presentations at major meetings, such as international UICC meetings. Staff members also are encouraged to participate in the symposium and workshops sponsored by the International Cancer Information Services Group (an organization affiliated with the UICC, of which the two CISes are founding members).

Thus a collaboration that started as a chance meeting more than 20 years ago, has been nurtured, with mutual respect and support, into a successful effort which is strengthening international partnerships, fostering common objectives, and increasing collaboration.
Countries interested in starting a Cancer Information Service program are encouraged to contact the International Cancer Information Service Group, a multi-national UICC (International Union Against Cancer) affiliate, which works to help other countries around the world develop quality cancer information services and patient information resources around the world.

Last Updated: 8 January 2008