CancerCare® Establishes Patient Values Initiative Releases Focus Group Assessment
treatment decisions and care plans
NEW YORK, New York (June 13, 2017) – CancerCare ® has announced the establishment of the CancerCare Patient Values Initiative a multi-pronged effort with an aim to reframe the national healthcare 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 factors 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 healthcare 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, emotional, etc. – of the cancer experience for patients and families nationwide.
This first white paper summarizes the findings from a series of focus groups held with CancerCare oncology social workers and with cancer patients 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 esteemed 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 “The Many Voices of Value: A CancerCare* Focus Group Assessment”* report, released earlier this month at the 2017 American Society of Clinical Oncology (ASCO) Annual Meeting, is available for download at the CancerCare website (www.cancercare.org/PatientValuesInitiative). Members of the Advisory Board are Amy Berman, BSN, RN, LHD; Randy Burkholder; Patricia J. Goldsmith, Patti Jewell, MPA; Sandra Kurtin, PhDc, ANP-C, AOCN; Susan M. Love, MD, MBA; Cynthia Floyd Manley; Edith Mitchell, MD, FACP; Hector Nuñez; Lee Schwartzberg, MD, FACP; Ellen Sonet, JD, MBA; Michael K. Wong, MD, PhD, FRCPC; and Michael Zincone.
Founded in 1944, CancerCare is the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer. Our comprehensive services include counseling and support groups over the phone, online and in-person, educational workshops, publications and financial and co-payment assistance. All CancerCare services are provided by oncology social workers and world-leading cancer experts. Headquartered in New York, NY, CancerCare maintains three additional locations in Norwalk, CT, Ridgewood, NJ and Syosset, NY.
To learn more, visit www.cancercare.org or call 800-813-HOPE (4673).