Robert Hood / Fred Hutch News Service
SEATTLE — May 24, 2017 — The National Cancer Institute has awarded $24 million to Fred Hutchinson Cancer Research Center to continue operating the NCI’s primary public access point for cancer information in both English and Spanish.
With the new contract, the Contact Center will emphasize clinical trial education and referrals, increasing outreach to medically underserved populations and integrating innovative communication technologies.
“We are constantly adapting to meet people’s information-seeking needs,” said Nancy Gore, director of the Contact Center, which provides free phone and online help to cancer patients and their families. “The sophistication of our clients has certainly increased over time because of what they’ve been able to access and read online about their conditions before contacting us. Now they often need to know how or whether specific information applies to their case, and that’s where we are able to provide additional context and education, including questions to take back to their health care provider to help further their understanding.”
The National Cancer Institute originally established contact centers at several NCI-designated cancer centers throughout the country; the first call was taken in 1976. The Contact Center at Fred Hutch joined this effort in 1981, and eventually became the sole operator in 2009, when NCI consolidated existing operations into a single Contact Center.
Gore has worked at the Contact Center at Fred Hutch for 23 years and manages a team of about 65 employees, including cancer information specialists who answer inquiries and oncology-certified nurses who provide technical assistance on interactions and are members of the training team for new staff.
The group handled close to 92,000 inquiries last year, 48 percent by phone and 43 percent by live chat. While the number of calls has decreased over time — a trend seen at other contact centers — questions through the live-chat option are on the rise. The Fred Hutch team also responds to questions that come through email, which makes up 8 percent of inquiries. A sliver of inquiries, 1 percent, come through social media.
People can reach the service Monday through Friday, 9 a.m. – 9 p.m. ET by calling 1.800.4.CANCER (800.422.6237), through online live chat or by email on NCI’s website www.cancer.gov. Bilingual (English-Spanish) staff members are available on all access channels.
“Many times people will go to a doctor’s appointment and all they hear is a cancer diagnosis, and then their heads spin as they try to take in all the details,” Gore said. “We try to help the person best understand their situation and come up with questions that they can ask their doctor.”
In more recent years, Gore has noticed a pronounced trend toward clients asking about clinical trials and research studies.
“The team has focused on not only responding to these questions but also normalizing clinical trials as a treatment option even when clients may not proactively ask about them,” she said. “The information specialists will routinely help clients search for NCI-sponsored clinical trials and then prepare them to talk it over with their doctors.”
Eric Suni, who has been a cancer information specialist with the Contact Center since 2010, is equipped with a headset, computer and scratchpad for notetaking as he waits for the next call at his workstation. He says that he never knows what type of call he’ll get next: it might be straightforward, sad, complicated — or a mix. Some callers get right to the point with their questions, others have more of a story to tell. Suni and the other information specialists are adept at listening, assessing and tailoring their responses to meet each of their client’s needs.
“You’ve got to be flexible,” he said.
He starts a typical call by asking the caller to tell him more about the situation and the information they’re looking for. Suni listens to the caller and jots down notes including the type of cancer, where it is in the body, and the questions or concerns the caller is sharing. He places the caller on hold for a few minutes as he deftly searches through NCI and other online resources, then returns to the call to share the relevant information with the caller.
He emphasizes that he’s a trained information specialist, not a doctor or a nurse, and encourages the callers to ask their doctor for advice. Suni tailors his approach to each caller or client based on their specific situation and information needs; these are unscripted and unique interactions.
With the newly-awarded three-year contract, the team at Fred Hutch will also be looking at other ways to have a greater impact. They are planning to work with NCI to explore health communications research studies on how they can better impact callers’ health. For instance, later this summer Fred Hutch smoking-cessation researchers will begin a phone intervention conducted by the information specialists and targeting longtime smokers who are getting screened for lung cancer.
Even with the changes, a fundamental challenge that the information specialists face remains all too common.
“Sometimes the answer they seek doesn’t exist,” Gore said. That can be one of the hardest aspects of a cancer diagnosis, a feeling familiar to Gore, who lost her first husband to melanoma 30 years ago when their children were young.
“If I had called the Center back in 1987, they would have done just what they do today — worked with my fears and anxieties and my wanting to know. And they could also have talked to my husband,” she said in the Fred Hutch series “Share Your Story.”
At Fred Hutchinson Cancer Research Center, home to three Nobel laureates, interdisciplinary teams of world-renowned scientists seek new and innovative ways to prevent, diagnose and treat cancer, HIV/AIDS and other life-threatening diseases. Fred Hutch’s pioneering work in bone marrow transplantation led to the development of immunotherapy, which harnesses the power of the immune system to treat cancer. An independent, nonprofit research institute based in Seattle, Fred Hutch houses the nation’s first cancer prevention research program, as well as the clinical coordinating center of the Women’s Health Initiative and the international headquarters of the HIV Vaccine Trials Network.