title: Enhancing measurement in health outcomes research supported by Agencies within the US Department of Health and Human Services.
abstract: 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.
authors.affiliation: 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. reeveb@mail.nih.gov
authors.forename: Bryce B
authors.initials: BB
authors.lastname: Reeve
authors.forename: Laurie B
authors.initials: LB
authors.lastname: Burke
authors.forename: Yen-pin
authors.initials: YP
authors.lastname: Chiang
authors.forename: Steven B
authors.initials: SB
authors.lastname: Clauser
authors.forename: Lisa J
authors.initials: LJ
authors.lastname: Colpe
authors.forename: Jeffrey W
authors.initials: JW
authors.lastname: Elias
authors.forename: John
authors.initials: J
authors.lastname: Fleishman
authors.forename: Ann A
authors.initials: AA
authors.lastname: Hohmann
authors.forename: Wendy L
authors.initials: WL
authors.lastname: Johnson-Taylor
authors.forename: William
authors.initials: W
authors.lastname: Lawrence
authors.forename: Claudia S
authors.initials: CS
authors.lastname: Moy
authors.forename: Louis A
authors.initials: LA
authors.lastname: Quatrano
authors.forename: William T
authors.initials: WT
authors.lastname: Riley
authors.forename: Barbara A
authors.initials: BA
authors.lastname: Smothers
authors.forename: Ellen M
authors.initials: EM
authors.lastname: Werner
mesh_terms: D035843:Biomedical Research; D003199:Computer Systems; D003657:Decision Making; D006291:Health Policy; D006304:Health Status; D006801:Humans; D009316:National Institutes of Health (U.S.); D017063:Outcome Assessment, Health Care / Q000379:methods* / Q000592:standards; D011594:Psychometrics; D011788:Quality of Life; D012984:Software; D011795:Surveys and Questionnaires; D014481:United States; D014483:United States Dept. of Health and Human Services; D014486:United States Food and Drug Administration