Person-Centered Outcome Metrology: Principles and Applications for High Stakes Decision Making

407 Pages·2023·10.854 MB·English

by  William P. Fisher Jr., Stefan J. Cano

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
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ISBN978-3-031-07464-6 ISBN978-3-031-07465-3 (eBook)
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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