How to Undertake Outcomes Research in Oncology
Outcomes research is a commonly used term to describe research that focuses on evaluating the quality and effectiveness of care delivery in the routine care setting. However, there is no universally accepted definition or consensus on what this area of inquiry entails. The terms “outcomes research”, “health services research”, and “comparative effectiveness research” are often used interchangeably; however, each seeks to address slightly different research questions. Herein, we examine the evolution of outcomes research, from measuring and reporting on aspects of cancer care delivered using retrospective chart review and administrative data to driving quality improvement via measuring quality, defining performance targets, and evaluating alternative treatments in routine practice through to observational and prospective, pragmatic evaluations of interventions and new models of care.
KeywordsOutcomes Administrative data Quality measures Indicators Quality improvement Effectiveness Patient-centered outcomes
List of Technical Terms and Abbreviations
Data collected routinely for billing purposes.
American Society of Clinical Oncology.
American Society of Hematology.
A type of observational study that compares a group with an existing outcome (“cases”) with a similar group without the outcome (“controls”) with respect to an exposure.
A study in which researchers compare what happens to a group that has been exposed to a particular variable with a group who have not been exposed.
Utilizes observational data to compare the benefits and harms of two or more alternative treatments in a real-world, routine care setting to fill in gaps in data derived from randomized trials, such as uptake, long-term complications, and resource utilization, or where such data is missing from randomized trials.
A structured, systematic consensus process that utilizes iterative rounds of evaluation, performed by a panel of experts, to converge on an answer.
Descriptive research that is conducted on a population-based cohort or at the system level to address policy-related questions to inform the organization, funding, and/or the delivery of health care.
Emphasizes the use of endpoints to examine effectiveness and improve patient care.
Plan-Do-Study-Act; iterative cycles of quality improvement.
Measures that evaluate actions or components of care delivery.
Mathematical constructs, consisting of a numerator and denominator, that are used to quantify, evaluate, and compare the quality of structures, processes, or outcomes of care being delivered; usually expressed as the proportion of patients receiving a service relative to the number who were eligible to receive that service.
Simple line graph of a measure plotted against time; used to evaluate and visualize trends, patterns, and variation in data in response to process improvement efforts.
This indicator measures the physical and human capital resources available to deliver care.
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