CANCERCARE® has announced the publication of a patient manifesto that emphasizes the importance of including patients’ values and priorities in cancer treatment planning. This manifesto can be used to inform and advocate with policymakers, insurers, health-care administrators, electronic medical record developers, and clinicians regarding the inherent challenges in shared decision-making between patients and physicians. It can also provide a roadmap to guide the development of resources and tools that will help integrate what is important to patients into their treatment decision-making process.
The manifesto was developed as part of CancerCare’s Patient Values Initiative, a multipronged effort aimed at reframing the national health-care policy dialogue to ensure that including patients’ priorities in treatment decision-making becomes a standard of care.
THE CENTRAL premise of the CancerCare Patient Values Manifesto is that people with cancer and their clinical care teams have a right to relationships rooted in mutual respect. In such relationships, communication is open and culturally competent, plain language information is exchanged, goals are shared, and patients’ priorities are acknowledged throughout the continuum of care.
Treatment plans should reflect a shared understanding of the patients’ goals and personal priorities, while including physicians’ judgments that optimize treatment for patients and their families. Equally important is a shared understanding that the physical, emotional, and financial consequences of a cancer diagnosis and its treatment can be felt for years to come.
According to CancerCare, historically, an uneven balance of power between people with cancer and their physicians has limited the two-way flow of information. It has made it difficult for patients and caregivers to work with their physicians in making informed treatment decisions. Though this dynamic has started to shift in recent years, the manifesto calls for more widespread adoption of patient-centric care models, where the delivered care is meaningful and appropriate to the individual patient’s circumstances and goals.
THE MANIFESTO builds on a body of research led by the Patient Values Initiative and its advisory board of experts. Recent publications include two white papers. The first publication, Many Voices of Value, discusses the findings from focus groups with oncology social workers and patients and highlights the value of including what’s important to patients in their treatment plans, before treatment begins. The second white paper, Decision Making at the Point of Care: Voices of Oncology Providers, reports on in-depth interviews with 15 oncology providers. The notable finding is that, although many oncology providers want to learn more about their patients’ quality of life priorities, there are significant barriers to ensuring that what is important to patients becomes part of treatment decision-making. ■