Person-Centered Outcome Metrology: Principles and Applications for High Stakes Decision Making PDF
Preview Person-Centered Outcome Metrology: Principles and Applications for High Stakes Decision Making
Springer Series in Measurement Science and Technology William P. Fisher, Jr. Stefan J. Cano Editors Person-Centered Outcome Metrology Principles and Applications for High Stakes Decision Making Springer Series in Measurement Science and Technology SeriesEditors MarkysG.Cain,ElectrosciencesLtd.,Farnham,Surrey,UK GiovanniBattistaRossi,DIMECLaboratoriodiMisure,UniversitadegliStudidi Genova,Genova,Italy JiríTesař,CzechMetrologyInstitute,Prague,CzechRepublic MarijnvanVeghel,VSLDutchMetrologyInstitute,Delft,Zuid-Holland, TheNetherlands Kyung-YoungJhang,SchoolofMechanicalEngineering,HanyangUniversity, Seoul,Korea(Republicof) The Springer Series in Measurement Science and Technology comprehensively covers the science and technology of measurement, addressing all aspects of the subjectfromthefundamentalprinciplesthroughtothestate-of-the-artinappliedand industrial metrology, as well as in the social sciences. Volumes published in the series cover theoretical developments, experimental techniques and measurement bestpractice,devicesandtechnology,dataanalysis,uncertainty,andstandards,with application to physics, chemistry, materials science, engineering and the life and socialsciences. (cid:129) William P. Fisher Jr. Stefan J. Cano Editors Person-Centered Outcome Metrology Principles and Applications for High Stakes Decision Making Editors WilliamP.FisherJr. StefanJ.Cano UniversityofCalifornia ModusOutcomes(aDivisionofThread) Berkeley,CA,USA Cheltenham,UK Thisbookisanopenaccesspublication.Thistitleisfreelyavailableinanopenaccessedition withgeneroussupportfromtheLibraryoftheUniversityofCalifornia,Berkeley. ISSN2198-7807 ISSN2198-7815 (electronic) SpringerSeriesinMeasurementScienceandTechnology ISBN978-3-031-07464-6 ISBN978-3-031-07465-3 (eBook) https://doi.org/10.1007/978-3-031-07465-3 ©TheEditor(s)(ifapplicable)andTheAuthor(s)2023 OpenAccessThisbookislicensedunderthetermsoftheCreativeCommonsAttribution4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits use, sharing, adaptation, distribution and reproductionin any mediumor format, as long as you give appropriate credit to the originalauthor(s)andthesource,providealinktotheCreativeCommonslicenseandindicateifchanges weremade. Theimagesorotherthirdpartymaterialinthisbookareincludedinthebook’sCreativeCommonslicense, unlessindicatedotherwiseinacreditlinetothematerial.Ifmaterialisnotincludedinthebook’sCreative Commonslicenseandyourintendeduseisnotpermittedbystatutoryregulationorexceedsthepermitted use,youwillneedtoobtainpermissiondirectlyfromthecopyrightholder. Thisworkissubjecttocopyright.AllrightsarereservedbythePublisher,whetherthewholeorpartofthe materialisconcerned,specificallytherightsoftranslation,reprinting,reuseofillustrations,recitation, broadcasting,reproductiononmicrofilmsorinanyotherphysicalway,andtransmissionorinformation storageandretrieval,electronicadaptation,computersoftware,orbysimilarordissimilarmethodology nowknownorhereafterdeveloped. Theuseofgeneraldescriptivenames,registerednames,trademarks,servicemarks,etc.inthispublication doesnotimply,evenintheabsenceofaspecificstatement,thatsuchnamesareexemptfromtherelevant protectivelawsandregulationsandthereforefreeforgeneraluse. The publisher, the authors and the editors are safe to assume that the advice and information in this bookarebelievedtobetrueandaccurateatthedateofpublication.Neitherthepublishernortheauthorsor theeditorsgiveawarranty,expressedorimplied,withrespecttothematerialcontainedhereinorforany errorsoromissionsthatmayhavebeenmade.Thepublisherremainsneutralwithregardtojurisdictional claimsinpublishedmapsandinstitutionalaffiliations. ThisSpringerimprintispublishedbytheregisteredcompanySpringerNatureSwitzerlandAG Theregisteredcompanyaddressis:Gewerbestrasse11,6330Cham,Switzerland This work was inspired by the insights and collegiality of Benjamin D. Wright and A. Jackson Stenner. Both made fundamental and lasting contributions to measurement researchanddevelopmentthatwillcontinueto guidetheoryandpracticefordecadestocome. Preface The chapters in this book document the valuable work being done by researchers who have persisted in a radically different metrological vision of the role to be played by quantitative methods in healthcare outcomes management. These researchershavesucceededinbringingforthmutuallycomplementaryandcoherent perspectivesthatareparadigmaticallysetapartfrommainstreampractice.Wherethe dominant statistical paradigm prioritizes the objectivity of data as the basis for credible generalizable conclusions, the authors of the chapters in this book instead prioritize the metrological objectivity of a quality-assured unit quantity as a trust- worthy basis for communicating in common languages. Where the mainstream prioritizescentralized planning, data gatheringand analysis, and statistical hypoth- esis testing as signature hallmarks of quantitative methodology, the authors of the chapters in this book instead complement data with distributed networks of instru- mentsandpredictivetheories. Instead of merely numeric results signifying often incomparable or unknown consequences acrossdata sets,thechapters inthisbookfocus onenabling individ- uals to tell personally meaningful stories of healing, development, and improved outcomes. Metrologically speaking, trust is less a function of isolated and discon- nectedfacts,howeverobjectivetheymaybe,thanitisafunctionofthedemonstrated explanatorypoweroftheoreticalpredictionsandthereproducibilityofexperimental tests.Thechaptersinthisbookprovideinsightsintotheprinciplesinvolvedinthese testsandpredictions,withmultipleexamples. Thoughdelayedbytheundeniableimpositionsofthepandemic,andthoughonly abouttwothirdsoftheplannedchaptersareincludedhereinthefinalproduct,this book represents what we feel to be the beginning of new directions in healthcare outcomes measurement and management. Several of the authors unable to partici- pateinthisvolumeareeagertocontributetoasecondeffortofthiskind,asareother colleagues also working in this area. We hope in due course to produce not only another collection in this vein but to also participate in the emergence of new professional associations, journals, textbooks, and standards groups in the coming years. vii viii Preface Thatis,werecognizethenecessaryandcomplementaryrolesthatmustbeplayed by literary, social, and material technologies if fundamental changes in healthcare are ever to be achieved. The mere objective existence of facts has never been sufficienttothetasksoforganizingsciencesoreconomies.Rather,humaninterests insomefactsandnotothersmustcohereinformsofsocialandpoliticalorganization that make objectively reproducible phenomena communicable in shared, trusted systems.Thechaptersbroughttogetherhererepresentthebarestbeginningofefforts aimedatcreatingsuchsystems. Berkeley,CA,USA WilliamP.FisherJr. Cheltenham,UK StefanJ.Cano Acknowledgments WilliamFisherthankshisfriendandco-editor,Stefan,forinitiatingthisprojectand forthemanyyearsofengagingdialogue. Williamalsothankshiscolleaguesatthe Research Institutes of Sweden (RISE, Gothenburg), the Teaching Institute for Excellence in STEM (TIES, Cleveland, Ohio), and at the University of California (Berkeley) for ongoing dialogues and stimulating exchanges of ideas. Particular value has been contributed by Leslie Pendrill and Jeanette Melin at RISE, Jan Morrison at TIES, and Mark Wilson in Berkeley. We don't always agree on the specifics, but finding the differences that make a difference continues to guide theway. Stefan Cano would like to thank his mentor, friend, and co-editor William for openingdoorstoanewworldofpossibilitiesinperson-centeredoutcomemetrology. StefanalsothanksLeslieandJeanetteatRISEfortheircollaborationandcollegiality in the NeuroMet project. Finally, Stefan is grateful to the following people for making his 15-year journey into the world of metrology such a rich and engaging experience: David Andrich (University of Western Australia), Thomas Salzberger (University of Vienna), Andrea Pusic (Harvard Medical School), Anne Klassen (McMaster University), John Browne (University of Cork), Patrick Marquis (ModusOutcomes,USA),andAntoineRegnault(ModusOutcomes,France). ix Contents 1 IdeasandMethodsinPerson-CenteredOutcomeMetrology. . . . . . 1 WilliamP.FisherJr.andStefanJ.Cano 2 AClinician’sGuidetoPerformanceOutcomeMeasurements. . . .. 21 AnnaG.Mayhew 3 MeasuringHealth-RelatedQualityofLifeinDementia. . . . . . . . . . 35 SarahC.Smith 4 ImprovingClinicalPracticewithPerson-CenteredOutcome Measurement. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53 DianeD.AllenandSangS.Pak 5 AnAdaptiveStrategyforMeasuringPatient-Reported Outcomes:IncorporatingPatientPreferencesRelevant toCost-BenefitAssessmentsofVisionRehabilitation. . . . . . . . . . . . 107 RobertW.MassofandChrisBradley 6 FunctionalBinocularVision:TowardaPerson-Centered Metric. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 151 MaureenPowersandWilliamP.FisherJr. 7 AdvancingtheMetrologicalAgendaintheSocialSciences. . . . . .. 165 JohnMichaelLinacre 8 EquatingMeasuringInstrumentsintheSocialSciences: ApplyingMeasurementPrinciplesoftheNaturalSciences. . . . . .. 195 DavidAndrichandDraganaSurla 9 AddressingTraceabilityinSocialMeasurementEstablishing aCommonMetricforDependence. . . . . . . . . . . . . . . . . . . . . . . . . 227 ThomasSalzberger xi
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