Data Needs in Oncology: “Making Sense of The Big Data Soup”

Rising health care costs and continued concerns about safety, efficacy, and quality have resulted in the demand for more data and evidence by payors, regulators, providers, and patients alike. Stakeholders with different objectives for the use of data are driving the need for more and “better” data. It is important for organizations to not only understand how to handle and collect data but also translate it into actionable information that can help transform health care delivery. Appropriate use of data can lead to reduced health care costs and increased value to all stakeholders. In June 2012, NCCN assembled a work group composed of thought leaders from NCCN Member Institutions and other organizations to identify and examine the challenges of data generation, collection, and application for clinical, regulatory, and coverage decision-making. The NCCN Data Needs Work Group identified 4 main areas for consideration: data sources, patient-derived data, payor-collected data, and regulatory policy toward data generation and use.