Gwen Darien on Cancer Research

Perhaps the most compelling, as well as the least understood of the evolving models for cancer research and care is patient-centered research and care. As a cancer survivor and long-time advocate, I am often asked to provide the patient perspective in the various venues where patient-centered issues are discussed. In these venues, the patient is often portrayed, and viewed, as a two-dimensional figure—a flat, faceless cutout at the center of a diagram. Yet, as we all know, patients are multi-dimensional people with diverse values, experiences, and desires who are members of a greater community. We are more than our diagnosis and our life is comprised of much more than our disease. It is only possible to conduct true patient-centered research and to achieve true patient-centered care when the patient is known. To develop this knowledge, we need to understand both the individual and the greater community of which she is a part. We must engage patient voices in open, transparent discussions about issues that are important to them personally, as well as to consider these issues’ impact on society. We must understand how personal and community values inform conversations about value and how we look at the cost of treatment and the continuum of hope, risk and benefit. The Cancer Support Community established the Cancer Experience Registry to track the immediate, ongoing and changing social and emotional experience of cancer survivors. The registry reaches survivors across the c...
Source: PHRMA - Category: Pharmaceuticals Authors: Source Type: news