Reeve Bryce B, Burke Laurie B, Chiang Yen-pin, Clauser Steven B, Colpe Lisa J, Elias Jeffrey W, Fleishman John, Hohmann Ann A, Johnson-Taylor Wendy L, Lawrence William, Moy Claudia S, Quatrano Louis A, Riley William T, Smothers Barbara A, Werner Ellen M
Outcomes Research Branch, Applied Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, National Institutes of Health, EPN 4005, 6130 Executive Blvd., MSC 7344, Bethesda, MD 20892-7344, USA.
Qual Life Res. 2007;16 Suppl 1:175-86. doi: 10.1007/s11136-007-9190-8. Epub 2007 May 26.
Many of the Institutes, Agencies and Centers that make up the US Department of Health and Human Services (DHHS) have recognized the need for better instrumentation in health outcomes research, and provide support, both internally and externally, for research utilizing advances in measurement theory and computer technology (informatics). In this paper, representatives from several DHHS agencies and institutes will discuss their need for better instruments within their discipline and describe current or future initiatives for exploring the benefits of these technologies. Together, the perspectives underscore the importance of developing valid, precise, and efficient measures to capture the full burden of disease and treatment on patients. Initiatives, like the Patient-Reported Outcomes Measurement Information System (PROMIS) to create health-related quality of life item banks, represent a trans-DHHS effort to develop a standard set of measures for informing decision making in clinical research, practice, and health policy.
美国卫生与公众服务部（DHHS）下属的许多研究所、机构和中心都认识到健康结果研究需要更好的测量手段，并在内部和外部为利用测量理论和计算机技术（信息学）进展的研究提供支持。在本文中，来自DHHS多个机构和研究所的代表将讨论各自学科对更好测量工具的需求，并描述当前或未来探索这些技术益处的举措。这些观点共同强调了开发有效、精确和高效测量方法以全面衡量疾病和治疗给患者带来负担的重要性。像患者报告结果测量信息系统（PROMIS）这样旨在创建与健康相关的生活质量条目库的举措，体现了跨DHHS部门为开发一套标准测量方法以指导临床研究、实践和卫生政策决策所做的努力。
