Guest Expert: MaryAnn Monroe and NCI's Cancer Information Service
Originally posted by: Linda Parreco, AccrualNet Co-Moderator, on the former AccrualNet site on Mar 07, 2011.
Please join me in welcoming our monthly guest expert, MaryAnn Monroe, Program Director of NCI's Cancer Information Service (CIS). If you are not already aware of the CIS, it is a treasure within the NCI and the cancer information specialists who respond to questions from patients and the public are amazing. I had the opportunity to work with the NCI's CIS for several years and I have so much respect and appreciation for the wonderful service they provide. If you are not already referring your patients to the CIS to help them with general questions or to locate resources, consider this: The American Customer Satisfaction Index rated the telephone service 14 points higher than the average index for federal agency call centers. And their LiveHelp (instant messaging service) satisfaction index was 91, among the highest ever measured for a federal agency! A real credit to the quality and value of this service!
Everyone agrees, accrual to clinical trials needs a boost. The NCI's Cancer Information Service (CIS) can help. You may already be familiar with the CIS as a free public resource for the latest information on cancer, but you may not realize that the CIS can also help you with accrual to clinical trials.
Stevens and Ahmedzai (2004) reported that fear, information overload and poor timing of information were factors that influenced patients’ decisions not to participate in a trial. This is exactly where the NCI's Cancer Information Service can play a valuable and supportive role. NCI's CIS Information Specialists talk with cancer patients and assess their understanding of their disease and where they are in their cancer journey, and whether clinical trials might be appropriate for their particular situation. They don’t give medical advice or personal opinion, or replace the role and guidance of their health care team. Rather, by using evidenced-based resources from the NCI, Information Specialists engage in conversations with patients, helping them understand cancer, treatment options including clinical trials, and the research process. Being able to give personalized, tailored attention and accurate information to those who need it most is what the NCI's Cancer Information Service does best.
What do patients want? The participants in the study cited above wanted to receive supplementary information from an independent source, unrelated to the research team. The NCI's Cancer Information Service is great source for this kind of information and education and provides it in a caring and culturally sensitive manner. In addition, the Information Specialists can direct patients to relevant resources on cancer.gov or offer to send NCI publications via mail.
In 2010, approximately 100,000 people contacted the NCI's Cancer Information Service to ask questions that resulted in sharing information about cancer treatment and clinical trials. In July – December of 2010, NCI's CIS discussed clinical trials in over 11,000 calls. The service has been around for over 35 years. Our information specialists can answer questions by telephone (1-800-4-CANCER), LiveHelp instant messaging, and e-mail. Service is provided in English and Spanish. We’re available at 1-800-4-CANCER weekdays from 8:00 a.m. to 8:00 p.m. ET, with LiveHelp extended until 11:00 p.m.
The next time you engage your patients in a conversation about clinical trials, consider the NCI Cancer Information Service as a valuable, independent source of information and education for cancer patients and an important part of the patient’s decision making process.