Providing Support to Patients and Families as They Navigate a Cancer Diagnosis
When the White House Cancer Moonshot reignited more than two years ago, the initiative set a bold goal: end cancer as we know it today. It invited the cancer and patient community to devote their energy and ingenuity to efforts that will reduce the death rate from cancer by at least 50 percent over the next 25 years.
The Cancer Moonshot has also called on the cancer community to improve the experience of people and their families living with and surviving cancer. One key to that improved experience is expanding access to services to help patients and their families navigate health care treatments for cancer and other serious illnesses.
“Today, we know cancer as a disease in which we do not do enough to help people and families navigate cancer and its aftermath,” noted a White House statement. “We can help people overcome the medical, financial, and emotional burdens that cancer brings by providing support to navigate cancer diagnosis, treatment, and survivorship.”
According to The White House, “navigators guide families through every step of their cancer journey. Navigators have been shown to improve health outcomes and the patient experience by reducing time between diagnosis and treatment and increasing treatment completion. These services also lower health care costs by reducing ER visits and hospitalizations and reduce health disparities, including by facilitating access to services to address unmet social determinants of health, such as food and housing insecurity and transportation needs.”
“Community Is Stronger Than Cancer”
For 40 years, Cancer Support Community (CSC) has shared the vision that everyone impacted by cancer receives the support they want and need throughout their experience. Underscored by the belief that community is stronger than cancer, CSC strives to uplift and strengthen people impacted by cancer by providing support, fostering compassionate communities, and breaking down barriers to care. Patient navigation is at the heart of many of the services CSC provides as well as the research and policy initiatives it supports.
Sally Werner
“We know from our work supporting patients through our Cancer Support Helpline and at our nearly 200 network partner locations that navigation alleviates a number of challenges cancer patients and caregivers face, including, but unfortunately not limited to, barriers to care related to health disparities, financial toxicity, and social and emotional concerns,” said CSC CEO Sally Werner, RN, BSN, MSHA. “Additionally, studies have shown that patient navigation is effective in improving participation in cancer screening and reducing the time from screening to diagnosis and from diagnosis to treatment initiation. Emerging evidence suggests that patient navigation improves quality of life and patient satisfaction with care in the survivorship phase and reduces hospital readmission in the active treatment and survivorship care phases.1”
Cancer Support Helpline Provides Free, Personalized Cancer Navigation
One of the many ways in which CSC helps patients and their caregivers navigate their cancer experience is their Cancer Support Helpline (Helpline,) a free telephone (888-793-9355) and online chat service. CSC’s Helpline is staffed by trained oncology community navigators and resource specialists who can help patients and caregivers get information about cancer and cancer treatment options, identify local support groups, find treatment-related lodging and transportation resources, navigate financial issues, and more.
“Our trained navigators do a lot of legwork to help relieve the burden on patients and their caregivers,” Werner said. “They’re also there to lend an ear and provide emotional support.”
The Helpline proved to be a lifeline for Maria when she needed help navigating finances, medication, and insurance after a blood cancer diagnosis. After surviving treatments, chemo, and a bone marrow transplant, Maria found the cost of medications to treat complications unsustainable for even one month.
Maria recounts how she felt after her first conversation with a CSC Helpline navigator: “I was in a very different place than when I first got on that phone call,” she said. “I had a plan. There were steps. I was optimistic that I and the Helpline navigator would find a solution.”
Maria described her navigator as very hands on, kind, and skillful, with an incredible base of knowledge that was both meaningful and life-affirming.
“She said to me: ‘I’m literally with you. This landscape is familiar to me. Let me show you a couple paths you could take.’ That knowledge combined with the emotional support is exceptional.”
Maria and her navigator worked on grant applications to help her obtain the critical medication. Moreover, because the Helpline’s model of proactive navigation means providing more than just one-time support, Maria and her navigator continued to connect four times over the ensuing eight months.
Digital Mental Health Assessment Connects Patients and Caregivers to Resources
Navigating cancer requires navigating all the emotions, fears, anxiety, and financial stressors that accompany diagnosis, treatment, and survivorship. To help providers rapidly identify patient’s unmet mental health needs and connect them to needed support, CSC offers MyCareReport (MCR), a digital mental health assessment and referral platform.
The MCR platform and CSC’s distress screeners are deployed across CSC’s and Gilda Club’s network locations. Health care systems, private practices, and oncology centers can license the CSC screeners and digital referral solution without any cost going to the patient or caregiver. MCR includes automated referrals (in-house and community based), and tracks follow-up care while providing a complete, real-time data source of all screener responses for reporting and analytics.
Notably, MCR has been recognized by CancerX, a public-private partnership and national accelerator created to boost innovation in the fight against cancer as part of the Cancer Moonshot. CSC has been part of the CancerX initiative, whose goal is to reduce the burden of cancer through digital innovation since its founding, including serving on its steering committee.
“Patients with cancer who are diagnosed with anxiety or depression are at an increased risk for emergency department visits and hospitalization and have an almost twofold increased risk of dying by suicide compared with the general population2,” Werner said. “MCR helps to bring the patient and caregiver voice and needs to the forefront of care team communication. It enables patients and caregivers to navigate care and treatment, practice self-care, and enhance well-being.”
New Mobile App to Provide Precision Support
Another way CSC is harnessing the power of technology to help those impacted by cancer is MyCancerSupport, a no-cost mobile app. The app, currently being tested in six pilot locations, blends CSC’s support and navigation services, educational tools and resources, and community connections into one seamless and easy-to-navigate tool. It includes local calendars and event signups, healthy lifestyle information, and in-app messaging to help patients and caregivers engage with CSC and its local resources.
“Unique to this app, compared with the other 400,000-plus health apps in the app stores is the immediate hyper local connection to resources, classes, and support, where and when you need it, Werner said. “We look forward to bringing this essential resource to communities across the country, especially to help historically under resourced and medically underserved patients who don’t have easy access to navigation services.”
Reference
- https://acsjournals.onlinelibrary.wiley.com/doi/10.3322/caac.21788
- https://www.nature.com/articles/s41591-022-01745-y
