Friday, July 31 • 10:40am - 12:10pm
S13: Elevating the Patient Voice: Innovative Strategies for Improving Patient-centered Care Through Qualitative and Quantitative Systems of Reporting Patient Experiences

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The Institute of Medicine (IOM, 2001) identified the delivery of patient-centered care (PCC) essential in improving overall care in the United States. Today, patient-centered care is even more relevant in light of advances in personalized medicine.  Yet, in order to deliver personalized medicine it is critical that we develop methods and tools that accurately and meaningfully capture the patient experience. The purpose of this symposium is to highlight research initiatives designed to more accurately capture patient experience. The symposium will feature three research initiatives: 1) a patient-centered approach for understanding patient appraisals of quality of life (QOL) and how this approach will be used to develop more focused, concise QOL tools; 2) an international initiative for the systematic analysis of patient narratives;  and 3) a community-initiated approach to patient engagement through the Cancer Experience Registry as a tool to capture patient voice during the course of treatment and its implications for informing new research, policy and clinical care. These research initiatives will be discussed with respect to the challenges and opportunities for integrating data across systems and through diverse strategies of patient engagement to enhance care and accelerate discovery.

Chair: Joanne Buzaglo
Discussant: Kevin Stein

S13-1: Understanding Patient Experiences to Inform Treatment Decision-making: Implications for the use of a Patient-powered Registry, J. Buzaglo

S13-2: A Database of Patient Experience: Moving Beyond Anecdote, N. Pandhi

S13-3: Including the Patient's Perspectives in Patient-reported Outcomes: Assessment of Quality of Life Appraisal in Bladder Cancer, B. Rapkin

Friday July 31, 2015 10:40am - 12:10pm
Marquis Salon 7/8

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