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Listening to People with Cancer to Drive Change in Care and Policy

alt text There are many factors that can influence cancer treatment decisions including safety, efficacy, and cost. 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.

CancerCare recognizes these challenges, and recently established the CancerCare Patient Values Initiative, an effort to reframe the national healthcare policy dialogue to include what is important to patients and their families. 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.” These initial research findings support the hypothesis that resources are needed to help patients define and providers to ask about and understand patient priorities and preferences to help inform treatment planning, before treatment actually begins.

CancerCare 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.

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. With time, many patients said they could better communicate with their care team to incorporate what matters most into their care regimens. By then however, initial treatment was underway.

In the coming months, with guidance from our Patient Values Initiative Advisory Board of esteemed experts from across the oncology community, CancerCare will field additional surveys among providers and patients. As we validate and build upon these initial findings, our ultimate goal is to develop new resources that can be easily used by patients and clinicians to capture patient priorities during treatment planning.

I encourage you to read the “The Many Voices of Value: A CancerCare Focus Group Assessment” here.

Posted by Ellen Miller Sonet on June 14, 2017 in Advocacy, CancerCare News, Research
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