National Cancer Institute NCI Cancer Bulletin: A Trusted Source for Cancer Research News
August 10, 2010 • Volume 7 / Number 16

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Spotlight

NCI’s Cancer Information Service: Providing Information and Assistance Nationwide

Rick Muha had been active his whole life. So when he found his waistline expanding for no apparent reason, he tried to deal with it head on. One night after a long run, he was stretching and felt something strange in his lower back—a hardness that didn’t belong.   

“Sure enough, when I went upstairs I felt an outline of a hard mass,” his wife and NCI employee Cathy Muha said. That night at the after-hours clinic, an x-ray revealed a large tumor attached to his hip.

“From there, my husband’s situation got fast and furious,” she said. “I was left with a feeling of not knowing where to go; not knowing what kind of information I needed to prepare us for what we were about to face. As someone who works for NCI, I knew thousands of Americans confront this same feeling every day. But suddenly I was experiencing the daunting reality first-hand, and I realized how overwhelming it could be.”

This common scenario is why NCI’s Cancer Information Service (CIS) Contact Center exists, said Program Director MaryAnn Monroe. “The Contact Center provides information that is personalized and tailored to meet an individual’s need,” she explained. “There are no scripts and conversations and information provided are completely confidential. Our information specialists take as much time as needed to really help individuals understand their situation.”

Specialists Trained to Help

Lissett Santiago is one of 66 highly trained information specialists with NCI’s Cancer Information Service. Lissett Santiago is one of 66 highly trained information specialists with NCI’s Cancer Information Service.

For 35 years, NCI’s CIS Contact Center has been just a phone call away for anyone with questions about cancer. Since it was established in 1975, the CIS has answered well over 10 million calls. Whether an individual has been diagnosed with cancer or they have a loved one with cancer, the service is available free of charge.

“Cancer touches the lives of so many, and having caring, highly trained, and sensitive cancer information specialists available to answer questions and provide information may be what that person needs to be able to make informed decisions about their care,” said Mary Anne Bright, associate director of NCI’s Office of Public Information and Resource Management.

NCI’s CIS is located at the Fred Hutchinson Cancer Research Center in Seattle, WA, where a staff of 66 information specialists with backgrounds such as nursing and social work respond to thousands of calls, LiveHelp chats, and e-mails each year.

The information specialists who speak with callers undergo 6 weeks of initial training. They learn about cancer and cancer-related topics and how to navigate various online NCI resources to provide callers with the information they need. But, in addition to providing up-to-date information on cancer, Bright explained, sometimes they provide an understanding ear. ”Our information specialists care about more than just the accuracy of their information,” Bright said. “They also care about how they are delivering it, and how their clients feel about the service they receive.” NCI’s CIS, she continued, has the highest customer satisfaction scores in the Federal government to prove it.

Audio Audio Clips of Telephone Calls to NCI’s Cancer Information Service
(Type: MP3 | Time: 3:34 | Size: 41.2 MB)
Read the transcript
Listen to re-enactments of actual calls to the CIS Contact Center. The selected inquiries are followed by responses from CIS information specialists and then closing comments from callers. There is a two second pause between segments.

According to Leah Counts, a 2-year veteran CIS information specialist, for many of the people she talks with, one of the most difficult times comes right after diagnosis. “It’s the first time they’ve been diagnosed with cancer, and having to think about treatment options while dealing with the emotional stress is difficult for people,” she said. “Our service really offers something valuable to people by helping make their situation less overwhelming.”

The CIS Contact Center also provides information about available clinical trials, and that’s something that doctors don’t always talk about, said Deb Pearson, an NCI public health advisor. "Our mission is to support NCI and its research, and cancer treatment trials should be in the conversation from the very beginning, whenever possible,” she said. “Having people participate in these trials helps move research forward,” she stressed, and a clinical trial may be the best treatment option.

One Family’s Journey

As an NCI employee, Muha was familiar with the service before her husband’s diagnosis. But, she admits, “I had some trepidation about calling a 1-800 number when we heard the word ‘cancer’ and were suddenly propelled into a parallel universe.”

Over the course of her husband’s illness, Muha called the CIS Contact Center five times. She said the service was helpful along the entire cancer continuum, from diagnosis information to long-term survivorship issues. “The support we got was credible, confidential, and caring, and the information specialists used the most up-to-date science to help us go through our cancer journey,” she said.

“The most helpful part about calling the CIS was the assistance I got with understanding treatment options,” she continued. “When I went into a doctor’s office, I already knew the kinds of options that were available, the questions to ask, and had the validation that what we decided was the right course of action.”

The Contact Center also helped the couple figure out how to explain the situation to their kids in a way that was suitable to their varied ages. And because the Contact Center is available nationwide, instead of explaining her husband’s situation to relatives across the country, Muha could simply direct them to the CIS Contact Center.

“The consistency, quality of information, and same empathetic ear was really important to me when recommending that people call,” she said.

Multiple Avenues of Assistance

Over the years, the CIS has gone through multiple transformations to become what it is today. Bilingual information specialists who cater to Spanish-speaking callers first joined the CIS over 25 years ago. And the CIS Contact Center now is available to the public for longer hours (8:00 a.m. ET to 8:00 p.m. ET), offering help and information to more people. In addition to calling 1-800-4-CANCER, one can chat online with information specialists using LiveHelp, send a question via e-mail, and even ask questions on NCI’s recently launched Facebook page.

“The Contact Center deals with people holistically,” Pearson said. From the symptoms they may be having, to financial questions, to directing people to information that their health care providers may be too busy to provide.

Muha credits the CIS with helping her family to get through one of their most difficult experiences. “Services like the CIS don’t perform miracles, but they give you information so you can make decisions and tap into valuable resources,” she said. “That’s its beauty.”

—Sarah Curry

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