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Cancer Information Service Marks 25 Years

By Peggy Vaughn

In celebration of the 25th anniversary of the National Cancer Institute's Cancer Information Service, employees from CIS offices nationwide banded together to create a unique and colorful quilt. First displayed at a national meeting in Seattle last October, the anniversary quilt is now on tour, traveling to each of CIS's 14 regional offices.

The quilt is an apt symbol of 25 years of commitment and caring, said CIS Acting Director Mary Anne Bright.

"For a quarter of a century, the CIS has provided cancer patients, their families and health professionals with the latest and most accurate cancer information," she said. "This quilt, sewn by many caring hands, reflects the immense pride we have in our history and our mission."

That history begins in 1976. Just as NCI was exploring ways to better cancer communications, the news was filled with reports of Massachusetts Sen. Ted Kennedy's son Teddy being diagnosed with sarcoma. Inspired by the Kennedy family's ability to obtain the most up-to-date, lifesaving treatment for a cancer that was, at the time, largely incurable, NCI outlined a new mission in cancer communications.

"The goal was to equip people with the kind of reliable, science-based information needed to become active participants in their own health care," Bright said.

CIS Acting Director Mary Anne Bright cuts anniversary cake, with CIS quilt in the background.

CIS quickly became NCI's link to the public. Responding to 47,000 phone calls during its first year, the agency strove to interpret and explain research findings in a clear and understandable manner. Since 1976, CIS has responded to 9 million inquiries, principally over its toll-free 1-800-4-CANCER telephone number.

"CIS is unique among public health information sources in that it addresses all kinds of cancers," said NCI deputy director Dr. Alan Rabson. "It set the gold standard among all health agencies by responding to patients, caregivers and the public in a way they can easily understand."

Last year, CIS information specialists working in offices located throughout the United States served users nationwide and in Puerto Rico and the U.S. Virgin Islands. Logging in nearly 400,000 telephone requests for information last year, CIS provides service in English and Spanish or via TTY for deaf and hard-of-hearing people. Callers also have the round-the-clock option of listening to taped messages about the most frequently-asked-about cancer topics.

About two-thirds of CIS's 400-plus employees are directly involved in handling toll-free calls, said Linda Slan, a CIS project officer.

"Our staff uses a variety of references, including NCI's PDQ database of state-of-the-art cancer treatment and clinical trial information to answer calls about cancer prevention, early detection, treatment and survivorship," she said. "They're a committed and highly professional workforce."

About 70 percent of the calls, which average 12 minutes in length, are from women. The majority of callers seek information about breast cancer, from treatment options to information about clinical trials. CIS staff provides personalized attention and keeps all calls confidential, Slan said.

"The service is free and nobody is in a hurry," she said. "We'll work with you as long as you have questions to ask. We usually follow up the call by mailing relevant literature to the caller. Along with sharing information, we offer some much needed emotional support."

That personal touch is also available on LiveHelp, a newly added CIS instant messaging service for people with access to NCI's web site www.cancer.gov. Staffed by CIS information specialists from 9 a.m. to 5 p.m. Eastern time Monday through Friday, the service answers questions about cancer and helps callers navigate the NCI web site. As with the toll-free telephone number, about 80 percent of the message center users are patients and their families, but the service is also popular with health professionals.

Quilt panel from CIS branch in the Rocky Mountain region

"It's been interesting in that we've had a significant number of people from foreign countries using LiveHelp," Slan said. "They want to know about the latest treatments and technologies used here in the U.S."

Hoping to bridge the cancer information gap among minority and underserved medical groups that may not access the toll-free line or NCI web site, CIS collaborates with national, state and regional organizations under its Partnership Program.

"This program brings cancer information to people who do not traditionally seek health information over the telephone or who may have difficulties doing so because of educational, financial, language or other barriers," Bright said.

CIS is also something of a laboratory for communications research. Working with behavioral science and academic researchers, technology experts and regional organizations, it helps shape initiatives to better communicate healthy behaviors and risks to a variety of audiences.

While CIS adapted to become a multi-channel, and even global, information service over the years, the mission behind NCI's voice remains constant.

"While technology changes, our goal remains the same — to successfully reach the public with the most accurate cancer information possible," Bright said.


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