NEHI's spotlighting our innovative member, CancerCare
What’s the greatest thing about NEHI? Our members. We have a remarkable group of innovators, leaders and experts innovating and working across sectors to improve care and lower costs. We think we have a lot to learn from our members’ collective experience, vision, and cross-sector perspective, so we starting a series to “spotlight” our members and their innovative work.
First up, CancerCare. CancerCare is a national, nonprofit organization that provides free professional support services and information to people affected by cancer. We asked CancerCare a few questions about what they’re doing and where they see a need for innovation:
What does CancerCare do?
CancerCare was founded in 1944 to help people manage the emotional, practical, and financial challenges that cancer presents. Our array of comprehensive services includes everything from counseling and support groups, where we connect with clients through phone calls, online and in person, to educational workshops and publications, to financial and copayment assistance. Our services are provided by Masters level oncology social workers and renowned, world-leading cancer experts participate in our education programs.
CancerCare directly helped 180,000 people last year and distributed $13 million in financial assistance to cancer patients. We hosted more than 2 million visits to our websites, distributed 350,000 publications and provided 62 national education webcasts.
What are the biggest issues for cancer patients?
People in all stages of their cancer experience say they don’t have enough information about their illness, treatment options, benefits and risks, clinical trials, insurance coverage, and how to find emotional, financial and practical support. When they are first diagnosed, they are overwhelmed emotionally, they’re scared, and they’re ill-equipped to make the many necessary important decisions regarding their care and treatment. The information gap is huge.
In 2013, the Institute of Medicine highlighted this very issue in its report Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. The first priority, it noted, is that “the care system should support patients in making informed medical decisions that are consistent with their needs, values, and preferences. Cancer care teams should provide patients and their families with understandable information about the cancer prognosis and the benefits, harms, and costs of treatments.” And, the report authors conceded that “patient-centered communication and shared decision making in oncology are suboptimal.”
For many patients, the physical, emotional, financial, and social “costs” of cancer are unaddressed and these often cause debilitating and long lasting distress for patients and families. No one prepares or saves for cancer, and both the illness and its treatment pose challenges that are life defining on so many levels.
CancerCare recently issued a “Patient Access and Engagement Report.” What did you find?
We surveyed more than 3,000 unique respondents, and found that few patients report having enough information about their cancer and treatment options to be making informed choices regarding their care. Whether treated at an academic medical center or in a community setting, only about two-thirds of respondents reported having adequate information on the benefits or goals of their treatment plan, its possible side effects, the symptoms they may experience, and the reasons the plans were being recommended. Only a third had enough information about other treatment options. Especially concerning is that just 12% to 18% were adequately informed about clinical trial opportunities.
Importantly, fewer than half of respondents said they had enough information on aspects of treatment such as whether they would be able to continue working during treatment, how much home care would be needed, the emotional impact of having cancer and its treatment, and how much of the cost of care was their responsibility.
Another critical finding is that financial challenges overwhelm many people with cancer. Fifty-eight percent of respondents reported being distressed about their finances during treatment. Among those ages 25 to 54, 75% said cancer caused them financial hardship. In order to afford treatment, one-third of them reported cutting back on daily essentials, such as groceries and transportation, and/or borrowed from family members and friends; 21% missed a utility bill payment; and 17% missed a rent or mortgage payment.
With all these challenges facing cancer patients, where does CancerCare see opportunity for innovation?
There is a lot of opportunity to help foster a patient centered environment that is rich in educational resources, respectful of patients’ values and priorities, and supportive of open and honest communication. For some patients, this will help them feel empowered and confident. For others, it may feel burdensome and unmanageable; they may prefer a traditional, paternalistic relationship with their medical team.
Whatever the state of mind and circumstances surrounding patients and families, the mandate for providers and others who support patients is to deliver individualized care that reflects patients’ priorities and values. “Cookie-Cutter medicine” is just not acceptable. Health care professionals at CancerCare facilitate patient participation in understanding and choosing what the best treatment options are for them.