Patient Centeredness and Engagement in Quality-of-Care Oncology Research

More than a decade after the Institute of Medicine (IOM) first studied the quality of cancer care, obstacles to achieving high-quality care remain, and studies suggest that cancer care is often not as patient centered, accessible, coordinated, or evidence based as it could be. Patients, their families, and clinicians face a wide range of complex and often confusing choices regarding their health and health care concerns and require trustworthy information to decide which options are best for them. The Patient-Centered Outcomes Research Institute (PCORI) strives to fund clinical comparative effectiveness research, guided by patients, caregivers, and the broader health care community, that will provide high-integrity, evidence-based information to help people make informed health care decisions. This mission is well aligned with the IOM's recent conceptual frame-work and corresponding recommendations that recognize that addressing the needs of patients with cancer and their families is the most important component of a high-quality cancer care delivery system. PCORI seeks the opportunity to partner with diverse interdisciplinary research teams who demonstrate a strong commitment to the inclusion and engagement of patients and stakeholders as they work to develop high-quality cancer care delivery systems. We see rich opportunities for such partnership in the cancer care community, given the wealth of well-established patient advocacy groups and organizations and cutting-edge research institutions, all of which are working toward the common goal of improving the quality of cancer care for patients and their families. This article and the project it describes provide an example of an avenue for advancing this goal.