CIS: Growing the public voice of the National Cancer Institute

The Center's Cancer Information Service casts a wider net as it expands as both a resource provider and research partner
CIS team include (from left) Tara Rose, Dave Arguelles, Lauren Walker, Jenn Thompson, Holly Jacobson, Anabel Cole, Michelle Masterson, Rietta Williams and Ross Regev
The Hutchinson Center houses one of three NCI Cancer Information Service centers. Members of the expanding CIS team include (from left) Tara Rose, Dave Arguelles, Lauren Walker, Jenn Thompson, Holly Jacobson, Anabel Cole, Michelle Masterson, Rietta Williams and Ross Regev. Photo By Lillian Furlong

If you dial 1-800-4-CANCER, there's a good chance that one of your Hutchinson Center colleagues will be the voice on the other end of the phone. In its third year of a current five-year contract with the National Cancer Institute, the Center is host to one of three Cancer Information Service centers. And while the CIS at the Center has grown tremendously since inception, it's in the midst of getting a lot bigger—and busier.

For the past 30 years, the CIS has provided the most accurate, up-to-date cancer information to patients, families, the general public and health-care providers in a caring and easy-to-understand format. At the beginning of the latest Hutchinson Center contract, the NCI had just consolidated 14 call centers into four. Last spring, they consolidated the four into three. "What that meant was that we had a staff of about 17 people responding to the inquiries," said Nancy Zbaren, program director for the CIS at the Center. "Now that staff of information specialists will increase to 27. At the beginning of this contract, we doubled in size. Now we're more than doubling again." Over the summer, the Center hired 11 new staff members and renovated their workspace on the second floor of the Yale Building to accommodate the new people.

The other two existing CIS centers, one located at Memorial Sloan-Kettering in New York, the other at Sylvester Cancer Center in Miami, are also experiencing expansion. Every day, the three centers handle about 400 calls. All incoming traffic is routed to the first available center. That doesn't include the e-mail and LiveHelp instant messaging sessions that come from the NCI's Web site, Last year, the totals added up to more than 102,000 phone calls, more than 10,000 completed LiveHelp sessions, and more than 10,000 e-mails nationwide.

The three-prong CIS approach

The people who answer the calls have to be on their toes. Although they cannot provide diagnosis or referrals to specific physicians, CIS information specialists respond to questions about cancer screening, symptoms, diagnosis, treatment, clinical trials, support organizations and other concerns. They can provide free NCI educational materials, personalized clinical-trial searches and help callers navigate cancer resources on the NCI's Web site. On top of that, they can answer questions in both English and Spanish.

Despite the challenges, appreciation for the services CIS provides pours in regularly.

"I appreciate the assistance of your specialist. Whoever I chatted with provided a great deal of information and resources for my specific situation. I believe your service is very helpful," wrote one LiveHelp user. Another wrote, "I received a lot of information through LiveHelp. The person with whom I was speaking was very polite and gave me six links I could use to find the answers I was looking for. I will use LiveHelp in the future if need be. I think this is a great thing. Keep up the good work. Thank you."

Comments like those come from the people most affected by cancer; CIS users are typically spouses, relatives or friends of a diagnosed cancer patient, followed closely by the general public. "The CIS acts as the public voice of the National Cancer Institute. We pride ourselves on providing the latest, most accurate cancer information in an easy-to-understand language to cancer patients and their families," Zbaren said. "The CIS is a valuable resource to those members of the public who are actively engaged in seeking cancer-related health information."

While the information service centers are perhaps the most visible part of the CIS, it is only one arm of a three-pronged approach.

Another component, the Partnership Program, is responsible for disseminating cancer information to as many people as possible, with an emphasis on reaching communities of color and medically underserved populations. Coordinators have expertise in demographics and developing effective outreach programs. They form partnerships with national, regional and state organizations with similar goals that directly serve the targeted populations. Coordinators also provide extensive knowledge about clinical-trials education, smoking cessation, and breast and cervical-cancer screening. They help partners use NCI information, resources and materials and assist in planning, implementing and evaluating cancer education programs.

The third arm is a result of the unique situation of the CIS. Because of its direct link to thousands of information seekers and an extensive network of partners, the CIS is an ideal research partner. Researchers work with regional CIS offices to study ways of effectively communicating healthy lifestyles, health risks and options for preventing, diagnosing and treating cancer to callers.

The Hutchinson Center's Dr. Nigel Bush is the senior research coordinator in the Northwest; the other two are in Kentucky and Texas. "Our job between us is to stimulate collaborative research between CIS and external investigators," Bush said. "Our main role has everything to do with coordinating any CIS research nationwide. We each have our own regions, divided into vertical strips. Mine is the West Coast, Hawaii and Alaska, but we work together on national projects."

Bush keeps an updated database of potential and actual research collaborators around the region to facilitate networking and communications. They are working to narrow their external collaborative focus to fit within four priorities:

  • to test innovative health communications and education interventions;
  • determine how to increase access to cancer information and education;
  • examine how to disseminate interventions that have already proven effective; and
  • to understand why people do or do not contact information services and determine ways of reaching those who do not seek information.

The fact that such research is taking place locally benefits both the Hutchinson Center and NCI. "The Center has always given great support to CIS. With the sudden expansion we were able to adopt, that support is visible," Bush said.

CIS collaborates with survivorship program

The Cancer Information Service is collaborating with the Fred Hutchinson Cancer Research Center Survivorship Program, which offers follow-up care and health education to Alaska residents, including Alaska Natives, for whom cancer is the number-one killer.

In September, Dr. Debra Friedman, director of the survivorship program, made a grand-rounds presentation at the Alaska Native Medical Center in Anchorage. She also talked with tribal groups about the expansion of services to meet the needs of cancer survivors unable to travel to a survivorship clinic — an expansion made easier through the expertise of CIS.

"The CIS Partnership Program has been invaluable in helping our survivorship program create a working partnership with the Alaska Native Tribal Health Consortium," Friedman said. "The program's insights have allowed us to investigate novel ways to bring dedicated survivorship clinical care, education and research access to a large and previously underserved population."

CIS has been involved with the Fred Hutchinson Cancer Research Center Survivorship Program from its conception, when Friedman was coordinating information for a grant proposal to the Lance Armstrong Foundation. Friedman, and her survivorship program co-director Dr. Karen Syrjala, asked CIS to collaborate upon learning the extent of its involvement with the Alaska Native Tribal Health Consortium. CIS informed the consortium of the opportunity and they too joined the collaboration, writing letters of support. The Armstrong Foundation ultimately awarded $1.7 million to the Center and its affiliates for survivorship services. The other program affiliates are located in Seattle and Spokane.

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