Data needs for cancer comparative effectiveness research, and the Integrated Cancer Information and Surveillance System

Randomized controlled trials (RCTs) remain the gold standard for evaluating cancer intervention efficacy, though are not always feasible, practical, or timely, and often don’t adequately reflect patient heterogeneity and real-world clinical practice. Comparative effectiveness research can leverage secondary data to help fill knowledge gaps RCTs leave unaddressed; however, comparative effectiveness research also faces shortcomings. We discuss the development of a new model that informs an evolving framework articulating cancer comparative effectiveness research data needs. We present it in the context of the Integrated Cancer Information and Surveillance System (ICISS), a University of North Carolina initiative to develop a large linked-data computing system to support cancer-focused comparative effectiveness and outcomes research.