MANY FACTORS can influence treatment decisions patients make concerning their cancer care. These include safety, efficacy, and cost, among other concerns. Recently, CancerCare, a national organization dedicated to providing assistance at no cost to anyone affected by cancer, established the “CancerCare Patient Values Initiative,” an effort to reframe the national health-care policy dialogue to include the patient’s voice.
Initial Findings
As the first step in this important project, CancerCare has released a white paper titled, “The Many Voices of Value: A CancerCare Focus Group Assessment” outlining the need for new patient resources to document patient priorities during treatment planning. The emergence of new decision-support tools is helping to inform physicians’ recommendations; however, most of these tools are shaped through the eyes of payers and providers, and may not consider what matters most to patients.
Ellen Sonnet, JD, MBA
According to CancerCare’s report, these initial research findings support the hypothesis that resources are needed to help patients define their priorities and preferences, and for providers to ask about and understand these values to help inform treatment planning, before treatment actually begins.
As part of the initiative, oncology social workers and people with cancer were interviewed to shed light on how patients participate in deciding on a cancer treatment plan and how they view their roles and relationships with their care providers. Common themes emerged from the focus groups, including:
- Patients do not feel they are active participants in developing their treatment plans;
- Treatment planning discussions are often overwhelming for newly diagnosed patients;
- Few patients realize they may ask questions or know what questions to ask during these discussions;
- Patients want their providers to recognize and appreciate the effect treatment has on their lives; and
- Patients’ priorities and perceptions of their treatment change over time.
Ellen Sonnet, JD, MBA, Chief Strategy and Alliance Officer of CancerCare, and a member of the Patient Values Initiative Advisory Board, said, “We heard from patients that when first learning they had cancer, they felt overwhelmed, anxious, and frightened. During this period, it was nearly impossible for them to articulate their priorities and understand the implications of their treatment choices.” Ms. Sonnet noted that patients said with time they could better communicate with their care team to incorporate what mattered most into their care regimens. “By then, however, initial treatment was underway,” she added.
In the coming months, CancerCare plans to field additional surveys among health-care providers and patients in an effort to validate and build upon their initial findings. Ms. Sonnet noted “our ultimate goal is to develop new resources that can be easily used by patients and clinicians to capture patient priorities during treatment planning.”
For more information and a copy of the report, visit http://www.cancercare.org/accessengagementreport. ■
