About the Program

The Duke Cancer Care Research Program (DCCRP) began with a simple observation:

Having cancer is hard, and patients suffer tremendously through the entire course of cancer, from first diagnosis through survivorship or end of life.  Their suffering is not only physical, but also emotional, spiritual, and interpersonal.  Sometimes treatment itself makes the experience of cancer harder.  Interfacing with the health system can be difficult and unwieldy; it often overwhelms patients at a time when they are most distressed.  The health system focuses everything on the disease and healthcare providers, rather than on the patient and family.
 
Dr. Amy Abernethy created the DCCRP to restore the patient as the focus of healthcare.  The DCCRP’s purpose is:

To alleviate the suffering caused by cancer through developing new ways of caring for cancer patients that enhance patients’ quality of life, better manage commonly experienced symptoms, treat the whole person in body/mind/spirit, and improve the quality of cancer care.

In the world of academic medicine, the DCCRP approach turns traditional oncology on its head.  Rather than narrowing in ever closer in pursuit of a cure or an understanding of the disease, DCCRP asks, “How can we make each cancer patient as well as possible, in the present moment, in his or her own experience, and within the context of state-of-the-art medical treatment?”
 
DCCRP activities have a broad scope.  They encompass symptom management studies, developing new models of care, building research capacity, and ensuring quality of care.

DCCRP offers four key deliverables:

• We design, conduct, and disseminate information from clinical studies that address common cancer-related symptoms and concerns encountered by patients during the care cancer continuum.  Examples include breathlessness, pain, nausea/vomiting, insomnia, psychological distress, and spiritual need. 

• We are developing a new central data system that supports both clinical care and research.  This system coordinates: data collection and warehousing, patient assessment and monitoring, patient/provider communication, patient education, and quality benchmarking and oversight.  It will interdigitate with existing information systems such as those housing medical records, utilization data, and cost data.  It provides a mechanism to support other therapeutic clinical trials in efficiently collecting information on patient-reported outcomes such as quality of life and symptoms.
• We develop and test new models of care that wrap all that we currently know and are learning from our clinical and data analysis studies into best practice care models that treat the person, as well as the disease.  Currently, DCCRP is studying Pathfinders, a program that provides individualized, whole person-focused, psychosocial support to facilitate the patient’s “personal recovery.”  We will soon launch a new clinical care model in gastrointestinal cancers.  This model uses our data system in real-time to facilitate patient care, education, and continuous assessment; it employs an integrated clinical/research nurse who will introduce and refine symptom control and supportive care pathways. 
• We spearhead the quality improvement efforts of Duke Cancer Institute (DCI).  DCCRP is currently examining the quality of care at DCI against national quality standards, and preparing an institution-wide quality metrics system to enable benchmarking and tracking of cancer care quality at Duke.  In addition to disease-specific metrics, patient-focused metrics like symptom control and satisfaction with the care environment will be highlighted.  By placing the concept of quality care at the leading edge of advances in patient-centered care, we are making a dramatic statement that, at Duke, quality care is patient-centered care.