Tools to Help Patients Navigate Their Treatment Path

Monica Knoll is no stranger to cancer. Her sister is a breast cancer survivor and her father died from esophageal cancer. Still, she was not prepared for a breast cancer diagnosis in 2000.

“When I was diagnosed, I was at a loss for what to do. Once I heard the words ‘you have cancer,’ I felt like I was kicked in the stomach,” she told attendees at the Second Annual NCONN Conference. “I called my nurse ‘Sarge’ because she pushed me around and really told me what to do, which I needed because I was very much in denial.”

Now 10 years later, Knoll is a 4-time cancer survivor with a mission. “Before my cancer, I think I was lost. I didn’t really have a passion for a career. I didn’t really have a big motivating factor in my life,” she said. “Once I started talking with other breast cancer patients, I found we were overwhelmed by the process. There are so many resources we didn’t know where to begin.”

“Navigation was not even a word that was used when I was diagnosed. So many nurses didn’t have the tools they needed to provide for patients. Great resources existed, but there wasn’t a great way to disseminate them,” she said.

An Idea Is Born

Knoll wanted a way for cancer patients to get these necessary resources. “One of the components with cancer is getting organized. I felt that was missing in the cancer world because when I was diagnosed, there was no way of getting resources organized.”

Taking her experiences and those of other patients with breast cancer and survivors, Knoll founded the nonprofit organization CANCER101—an information resource for cancer patients—in 2002. According to CANCER101’s Website, its mission is “to empower cancer patients and their caregivers to take control over their diagnoses from the moment they learn they have cancer, a recurrence, or metastases through 10 years of follow-up care. Having a plan of attack, the means to stay organized, and access to appropriate resources and information is half the battle to getting through a cancer diagnosis.”

CANCER101 has the following objectives:

• Empower patients and caregivers to get organized and informed to fight their cancer
• Help healthcare professionals better manage their patients’ needs
• Educate patients about clinical trials and how to find them
• Ensure patients receive CANCER101’s resources when they need them most: when they learn they have cancer
• Provide complementary wellness support to help patients manage their side effects and emotional well-being
• Provide a unique social media and video campaign that offers nonmedical advice for patients, caregivers, medical professionals, and survivors
• Encourage survivors to educate family and friends about early detection and prevention

CANCER101’s Program Strategy

Knoll, who serves as the organization’s executive director, explained that the program has a three-fold strategy.

CANCER101 Planners

The organization provides free CANCER101 Planners to participating National Cancer Institute (NCI) and Association of Community Cancer Centers across the country. Following the first appointment with an oncology specialist, patients receive Planners that include national resources, important questions to ask their healthcare team, a glossary of medical terminology, a section for tracking medical bills, insurance information, and more. The Planners also include information provided by NCI, the American Society of Clinical Oncology, and the Coalition of Cancer Cooperative Groups (CCCG). CANCER101 also partnered with NCI to develop cancer-specific information for patients with each tumor type.

The Planner is designed as a tool to help nurse navigators manage their patients’ medical needs. “If the nurse navigator organizes the patient, the patient will be more likely to partner and take ownership of their health. If the patient takes ownership, they will allow the nurse navigator to help more patients,” explained Knoll.

She recommended that nurse navigators put the Planners together in advance and include additional cancer information and an NCI booklet inside the folder. Nurse navigators also should ensure patients know how to use the Planner, encourage patients to use the Planner and take it with them to all appointments, and check periodically that patients are filling out the Planner correctly.

The Website

The Website (www.cancer101.org) complements the Planner. It offers a live calendar of national teleconferences, Webinars, annual conferences, and retreats. Many of the same resources found in the CANCER101 Planner are available on the Website. An online version of the Planner and a smartphone application are under development.

In addition to CANCER101 resources, the Website provides external links to numerous cancer resources. When you click “National Cancer Resources” under “Get Informed” on the home page, you reach a CANCER101-compiled list of available Web resources covering a variety of cancer topics. Some of the specific topics include advocacy, drug information, employment issues, fertility, and financial help.

Another valuable tool the site provides is the “Learn From Our Partners” section, which hosts cancer resources furnished by CANCER101’s strategic partners. The Profiler Tool provided by Nexcura helps patients make informed treatment decisions by giving them access to the latest clinical research relevant to their diagnosis. The CCCG “What Is a Clinical Trial” section offers a Q&A of pertinent clinical trial topics to help patients who are weighing participation in the research programs. The “Questions to Ask Your Doctor” page by Cancer.net facilitates open communication between patients and doctors, which will empower patients as they make crucial treatment decisions.

Social Media

CANCER101 has launched a social media campaign that offers patients, caregivers, survivors, and healthcare professionals nonmedical advice to help make their lives easier using Facebook and Twitter.

In concluding her presentation, Knoll stressed that CANCER101 and healthcare professionals are a team. “We look at you [nurses] as our customers. We provide these resources to you as well as the patients and want your feedback.”