Outcomes Research

Abstract

Outcomes research is growing in visibility and stature, yet misconceptions persist. Many people remain unfamiliar with outcomes research and what distinguishes it from other research areas that study patient outcomes. Although I have previously framed the scope and purpose of outcomes research,1 I would like to provide further clarification about the field. Although the exact origins of the term “outcomes research’ are unclear, Ellwood2 coined the term “outcomes management” in his 1988 Shattuck Lecture, in which he envisioned a future in which patient management would be driven by the experience of how similar patients fared as a consequence of alternative treatments. Clancy and Eisenberg3 marked the entry of outcomes research into the scientific lexicon in 1998 with a classic article in Science that stated that “outcomes research—the study of the end results of health services that takes patients’ experiences, preferences, and values into account—is intended to provide scientific evidence relating to decisions made by all who participate in health care.” This elegant definition is both simple and profound. Outcomes research seeks to inform decisions and to hold pre-eminent the perspective of patients and the public. By saying that the research should assist those who participate in health care, they emphasize the needs of those who receive, provide, organize, and pay for health care, including the public. Eisenberg, as Director of the Agency for Healthcare Research and Quality, often quoted Representative John Porter’s remarks from a 1998 Congressional appropriations hearing. Porter stated, “What we really want to get at is not how many reports have been done, but how many people’s lives are being bettered by what has been accomplished.”4 Eisenberg frequently used the quote to emphasize the need for questions about what research has accomplished, and by extension, what our efforts in health care and …