Measuring Patient-Centeredness of Care for Seriously Ill Individuals: Challenges and Opportunities for Accountability Initiatives

Patient- and family-centeredness of care is particularly important for individuals with serious illness. In this article, we describe methodological challenges of using measures of patient- and family-centeredness in accountability initiatives such as public reporting and pay for performance. We begin with background on measuring patient- and family-centered care using standardized surveys, describe evidence of the use of these measures for quality improvement, and highlight methodological challenges in the development and implementation of these measures for use in accountability. To ensure that patient- and family-centeredness is the cornerstone of public and private accountability initiatives designed to promote high-quality care to seriously ill patients, we recommend development of (1) a nationally endorsed survey instrument that assesses patient and family experiences of serious illness care across the full range of patient trajectories and care settings in which this care is provided; (2) administrative data infrastructure that allows for identification and outreach to the most knowledgeable respondents for the survey, regardless of the patient's setting of care; and (3) a broad toolkit of quality improvement approaches to ensure that as the emphasis on accountability grows, providers across settings have access to tools that can help them improve patient- and family-centeredness of care for the seriously ill.