CancerCare Establishes Patient Values Initiative, Releases Focus Group Assessment

CancerCare has announced the establishment of the CancerCare Patient Values Initiative, a multipronged effort with an aim to reframe the national health-care policy dialogue so that it includes what is important to patients and their families. As the first step of 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 articulate and providers solicit and understand patient priorities and preferences during treatment decision-making—before treatment begins.

In today’s environment, when patients and providers discuss cancer treatment options, cost has joined safety, efficacy, and evidence as a factor to be considered. New decision-support tools, including value frameworks, guidelines, and pathways, are being developed and used to support oncologists in evaluating treatment options with patients. However, most of these tools are shaped through the eyes of payers and providers, and do not include factors that patients and families may view as vitally important or priorities.

“In order to drive meaningful change in the care of cancer patients and families, we must incorporate patients’ priorities and values into the treatment decision-making process,” said Patricia J. Goldsmith, Chief Executive Officer, CancerCare. “Only by understanding what is important to patients can we truly deliver patient-centered care and shape future health-care policies that align with patients’ needs and preferences.”

CancerCare is the leading national organization dedicated to providing free, professional support services, including counseling, support groups, educational workshops, publications, and financial assistance to anyone affected by cancer. The Patient Values Initiative builds on a foundation of pertinent research conducted for the CancerCare 2016 Patient Access and Engagement Report, to understand the true costs—physical, practical, financial, and emotional—of the cancer experience for patients and families nationwide.

The Many Voices of Value: A CancerCare Focus Group Assessment

This first white paper summarizes the findings from a series of focus groups held with CancerCare oncology social workers and patients with cancer to appreciate how patients participate in deciding on a cancer treatment plan and how they perceive their roles and relationships with their care providers in this context. Common themes from the focus groups include: 

  • 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,” said Ellen Sonet, JD, MBA, Chief Strategy and Alliance Officer, CancerCare. “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 say they can better communicate with their care team to incorporate what matters most into their care regimens. By then, however, initial treatment is underway.”

In the coming months, with guidance from an Advisory Board of experts from across the oncology community, CancerCare will field surveys among providers and patients to validate and build upon these initial findings. This research will inform the development of resources and a plan for activism to help elucidate and incorporate patients’ priorities and values into the treatment decision-making process.

The white paper, released earlier this month at the 2017 ASCO Annual Meeting, is available for download at the CancerCare website (www.cancercare.org/PatientValuesInitiative)

The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.


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