The Value of Data Collection within a Palliative Care Program

Abstract

Collecting reliable and valid data is an increasing expectation within palliative care. Data remain the crux for demonstrating value and quality of care, which are the critical steps to program sustainability. Parallel goals of conducting research and performing quality assessment and improvement can also ensure program growth, financial health, and viability in an increasingly competitive environment. Mounting expectations by patients, hospitals, and payers and inevitable pay-for-performance paradigms have transitioned data collection procedures from novel projects to expected standard operation within usual palliative care delivery. We present types of data to collect, published guides for data collection, and how data can inform quality, value, and research within a palliative care organization. Our experiences with the Quality Data Collection Tool (QDACT) in the Carolinas Palliative Care Consortium to collect data on quality have led to valuable lessons learned in creating a data collection system. Suggested steps in forming data-sharing collaborations and building data collection procedures are shared.

The Impact of Measuring Patient-Reported Outcome Measures on Quality of and Access to Palliative Care

“…It focuses on the change in the person's health status (recovery, restoration, and survival) and quality of life that can be attributed to the healthcare received. [4][5][6][7] Donabedian emphasized the need for reliable measures of structure and process that could be linked to outcomes so that quality improvements could be made. Ultimately, the outcome is the most important as it directly affects the patient and family, assesses the effectiveness of interventions, and encompasses the results of the whole cycle of care.…”

Conformance With Supportive Care Quality Measures Is Associated With Better Quality of Life in Patients With Cancer Receiving Palliative Care

“…1 The complexity and diversity of these scenarios demand an approach to quality monitoring that is aligned with where community-based palliative care is provided. 2 Delivery of care for the most vulnerable, including those with advanced cancer, requires the further coordination between all members of the patient's clinical team. 3 This includes shared delivery of high-quality palliative care that supports domains like quality of life, symptom management, psychosocial distress, and others.…”

Role of Data in Improving Care within a Health System: A Case Study of the Australian Health System

“…Care integration, investment in HIT systems, workforce development/capacity building, patientcentered care, and aligning provider payments and incentives represent some of the current approaches to improving care delivery [106]. Within clinical care, routinely collected data are commonly used to monitor situations, identify problems, and measure changes [105]. In addition to routine data, project specific data are used to guide choice of solutions, implementation, and for program evaluation, and as a way to influence others [108].…”