Data Needs for a Serious Illness Care Accountability System: A Framework and Recommendations

Successful implementation of a comprehensive accountability system for community-based serious illness care will require a robust data infrastructure. Data will be needed to support care delivery, quality measurement, value-based payment, and evaluation and monitoring.

The specific data needs in these areas need to be identified and understood, so that gaps in currently available data may be addressed.

We developed a framework that includes the needed data and data infrastructure to support the features and characteristics of a serious illness care accountability system. Based on this framework, we analyze the current data landscape to identify gaps in available data resources and capacities. This analysis was informed by conducting Internet-based research, interviews with key informants, and a survey of key informants.

Based on the identified gaps, we present a series of priority recommendations for advancing the data infrastructure to support community-based serious illness care. These recommendations include additional measurement of patient-reported outcomes, increasing interoperability among various data sources, increasing development and exchange of patient care plans, leveraging newly standardized data on patient functional and cognitive status, and using patient-reported information for clinical decision support at the point of care.

There are significant unmet data needs for a comprehensive accountability system in serious illness care, but these gaps can be prioritized and addressed through alignment and collaboration across stakeholders.