Cancer Data, Information Standards, and Convergent Efforts

Abstract

The cancer community is no stranger to informatics or data standards. Indeed, within health care, tumor registries and clinical treatment protocols heralded a rigor of data representation and structure that the rest of health care took decades to match. However, once underway, the larger arena of healthcare standards embraced the principles of inter-operability and data sharing at a scale that the early cancer templates, codes, and profiles were not designed to address. The universe of cancer information remains very large, however, and the utility of parochial standards persists. The question is how might the domain specific data standard needs of the cancer community be leveraged by the existing and emerging health information standards that surround it? Furthermore, because the domain of cancer is among the most striking multi-system and multi-organ disciplines in clinical medicine, what advantages might ensue from adoption of larger spectrum health information standards? Few of these questions will be answered in this introductory chapter; suffice that they be raised, cast into historical perspective, and followed by an authoritative suite of chapters that provide depth and insight on the relationship between cancer informatics and the larger world of health information standards.