As the Cancer Information Service prepares to celebrate its silver anniversary, it has earned a reputation as the "gold standard" for agencies that dispense health information.
But that's not good enough.
Founded by the National Cancer Institute as a toll-free telephone service in 1976, the CIS has continually sought new and better ways to provides more and more people with facts about cancer.
"We try to move with the times," said Nancy Zbaren, CIS project director for the Pacific Region. "Whatever way people feel most comfortable accessing the information, we want to help them."
Naturally, these days that means going online. The CIS launched an Internet site in 1999 and recently added a live-help, instant-messaging service, providing an interactive online service for users.
But the Internet is just one way the CIS continues to improve access. It also is expanding outreach efforts through training programs and partnerships with community organizations. One of the latest examples is an updated Cancer Clinical Trials Education Series.
"When most people hear about the CIS, they think we are primarily a telephone resource," Zbaren said.
"But we want people to recognize that we are the public education arm of the NCI. A priority in our mission, beyond responding to people who contact us, is to be very proactive."
The Pacific Region is one of 14 regions covering the entire country. Sponsored by the Hutch and housed on the 17th floor of Metropolitan Park East, the Pacific Region office serves Alaska, Hawaii, Idaho, Nevada, Oregon and Washington.
Spirit of caring
This month, the Pacific Region hosts the CIS' 25th anniversary meeting. The theme is "Celebrating Our Sprit of Caring and Commitment."
The conference begins Tuesday, Oct. 9, with a reception at the Experience Music Project and continues Oct. 10-12 with sessions at the Madison Renaissance Hotel. The meeting is expected to draw 250 people from the CIS' 14 regional offices, NCI, and partner organizations.
Besides being chosen to host the conference, the Pacific Region has another reason to be proud. Each CIS office nominated partners for special awards in 10 categories.
The winner of the award for reaching special populations was the Pacific Region's nominee, Melany Cueva of the Alaska Native Medical Center. Cueva trains community health aides who work in Alaska's remote villages.
The partnership with the Alaska Medical Native Center is one of many ways the CIS Pacific Region reaches out to underserved populations.
"We learned from our caller studies that most of the people dialing our 1-800 number were not demographically diverse," said Sandy Valko, partnership program manager. "Some populations, because of cultural and other barriers, are not comfortable picking up a phone and sharing personal information with a stranger."
The original inspiration for the CIS came when Sen. Edward Kennedy's son was diagnosed with sarcoma. Back then, there was no formal mechanism for the general public to obtain the latest information about cancer. However, because the Kennedy family knew how to work within the cancer establishment, it was able to obtain lifesaving treatment for a cancer that was then often incurable.
At the same time, the NCI had a mandate by the National Cancer Act of 1971 to develop a program to "disseminate and interpret ... scientific and other information respecting the cause, prevention, diagnosis and treatment of cancer."
Five years later, fueled by the Kennedys' experience and the NCA mandate, the CIS was born. For the first time, the most current cancer information became widely available, as CIS information specialists answered questions over the phone and mailed written material to patients, their families and friends, health professionals and the general public.
Over the years, the service grew in scope and sophistication. However, it still wasn't fully meeting its goal of making up-to-date cancer information available to everyone - particularly minorities and underserved populations.
As a result, CIS restructured its early outreach efforts to make them a more integral part of all local offices. In particular, it began collaborating with organizations that directly serve African Americans, Hispanics, American Indians, Alaska Natives, Asian/Pacific Islanders and rural populations.
In 1993, CIS further expanded its scope to become a laboratory for communications research, working with academic researchers, technology experts and community organizations. By seeking better ways of communicating healthy behaviors and health risks to a variety of audiences, CIS adapts to the changing information needs of cancer patients, caregivers and the public.
This month, for example, the Pacific Region is partnering with investigators at the Hutch and a local church to conduct the Healthy Neighbors Pilot Study. The purpose is to test the feasibility of collaborating with a community organization to bring Internet access to older women in a manner that will also increase social contact and interaction.
Computer stations will be set up at a church in a low-income neighborhood. Study participants will visit the church to use the computer station to access a breast-health Internet site. They also will be encouraged to make telephone contact with CIS staff and attend social events sponsored by the research team.
After six months, participants will be compared to a control group to measure use of the Internet site, social support, depression and several breast cancer-related variables.
This month marks the launch of the NCI's Cancer Clinical Trials Education Program. After being trained to use the new series, Cancer Information Service staff will be better equipped to share with partner organizations what clinical trials are, how they work and why they are important, said Nancy Zbaren, Pacific Region project director.
"It's a major priority of the NCI to educate the general public about clinical trials, and the CIS has a huge role in that," Zbaren said, noting that Pacific Region staff will be available to train interested Hutch and Seattle Cancer Care Alliance staff when they return in November from their own training.
"We receive more than 1,000 calls monthly. Of those who inquire about the latest treatment options for their cancer, CIS provides individualized clinical-trial searches for about a third of them to take to their physicians."
For more information about participating in CIS training to support clinical-trials education and outreach efforts and to obtain a slide program and speaker's guide, call Sandy Valko at 206-667-6898.