Health, Well-Being and Precision Medicine
健康福祉與精準醫療Chih-Hung Chang, PhD
Professor of Occupational Therapy, Medicine, and Orthopaedic Surgery
Washington University School of Medicine in St. Louischih-hung.chang@wustl.edu
2022 3rd Taiwan-Japan Occupational Therapy Joint Symposium | Health and Well-being for Interdisciplinary Talents of Precision Health | 08:45-09:15 am, December 3, 2022

HEALTHis …
WealthValuableis …
WELL-BEING

PRECISION MEDICINE
Promisingis …
Chih-Hung Chang, PhD
December 3, 2022
(2)

Smarter Health Care
Making Person-Centered, Data-Driven Health CareBetter, Faster and Cheaper
Methodology(Psychometrics)
XTechnology(Informatics)

Costs

Human-AI Assisted
Health Measurement andManagement

Outcomes

Chih-Hung Chang, PhD
December 3, 2022
(3) 3

Biopsychosocial Model of Health
BiologicalPsychological
HealthSpiritualSocial• To understand a person's medical
condition, three factors need to beconsidered.
• Bio (physiological pathology)• Psycho (thoughts, emotions and behaviors
such as psychological distress,
fear/avoidance beliefs, current coping
methods and attribution)• Social (socio-economical, socioenvironmental, and cultural factors suchas work issues, family circumstances andbenefits/economics)

Chih-Hung Chang, PhD
December 3, 2022
(4)

What is Health Measurement Capturing?

Precision
Medicine

Chih-Hung Chang, PhD
December 3, 2022(5)

Precision/Personalized Medicine• One size does not fit all• The right therapy for the right person at theright time
• The systematic use of information about eachindividual patient to select or optimize thepatient's preventative and therapeutic care
Chih-Hung Chang, PhD
December 3, 2022
(6)

Challenges in Health Measurement(for Predictive Modeling)
Garbage In, Garbage Out
Garbage
Data

PerfectData

PerfectModelGarbage
ModelGarbage
Results

IdeallyReliableandValidData

Testable
Model

MeaningfulandReproducible

Results

Garbage
Results
Chih-Hung Chang, PhD
December 3, 2022
(7)

Evolving Methodologies (Measurement Sciences) and Technologies(Informatics) Offer Promises and Plausible Solutions• Aid in the collection, processing and interpretation of health-related data inreal-time• Make timely information available when needed• Provide better organized information• Provide an efficient vehicle for the incorporation of health-related data into abusy clinic setting• Facilitate patient-physician informed clinical decision making

Chih-Hung Chang, PhD
December 3, 2022
(8)

What Can Health Measurement Do?
Measure What Matters

Screening

TailoredAssessment

Classification

Treatment

Evaluation

Chih-Hung Chang, PhD
December 3, 2022
(9)

Why is Health Measurement Needed?
Quantify the medical
condition

symptom frequency, severity

Characterize the personlevel of impairment, mental
health status

Compare to the norm(peers)satisfaction, quality of care,
expected outcomes

Guide optimaltreatment/therapy options

surgical procedure, assistive
technologiesChih-Hung Chang, PhD
December 3, 2022
(10)10Health Measurement to Management
Perspectives from Two Disciplines
Measurement ScienceData Science

If you can’t measure it,
you can’t improve it.

If you can predict it,
you can prevent it.

Chih-Hung Chang, PhD
December 3, 2022
(11)11

A Patient’s Health Data Journey
Turning Data Into Actionable Insights for Precision Medicine•Demographics•Clinical
Characteristics•Treatments•Outcomes

Elements

Capture•Paper-and-Pencil•Electronic•Wearable device•EMR/EHR•Structured Data
•Unstructured Data

Repository

Preparation•Extract•Transform•Load•Statistical Modeling•Data ScienceReport•Dashboard•Data Visualization

AnalysisChih-Hung Chang, PhD
December 3, 2022
(12)

Measurement-to-Management Steps
ObjectiveMeasurement

PersonAbility

Informed

Personalized

Improved

DecisionManagement

Outcomes

Conduct
Initial
Evaluation

Determine
Level ofImpairment

Goal Setting

Symptomand Disease
Management

Outcomes
Evaluation

Chih-Hung Chang, PhD
December 3, 2022
(13)13

Why Does Health Measurement Matter?
••••
••••
•••
•

Identify specific areas for treatment or rehabilitation
Facilitate physician-patient-family communications
Inform shared clinical decision-making
Predict short-term and long-term progress
Develop individualized care plan
Determine the value of treatment or therapy
Evaluate the efficacy of drugs or medical devices
Evaluate the effectiveness of interventions
Improve quality of care/experience
Reduce costs (medical and non-medical)
Fulfill reimbursement requirements…..
Chih-Hung Chang, PhD
December 3, 2022
(14)

The Needs to Integrate ‘Subjective’ Health Assessment
in Clinical Settings for Precision Medicine• Making health-related (e.g., patient-reported outcomes) data tobe an integral part of patient care• easy to collect• clinically meaningful• psychometrically sound• easily interpretable• readily available• Many disease-specific PRO measures are available, but few
used in clinical practice
Chih-Hung Chang, PhD
December 3, 2022
(15)

Needs and Challenges for
Better Clinical Outcomes Assessment Tools
Needs

Challenges

Assessment tools that are reliable, valid,and sensitive to detect meaningfulchangeA minimum set of items to reduce
respondent (and staff) burden(Less is More)

Different forms of an assessment tool tomeasure different ability levelsDifferent forms to be linked/equated on
the same metric(Score Cross-Walking)

Unbiased assessment tools acrossgroupsMeasurement invariance for meaningful
group comparisons(Equitable Measurement)

Chih-Hung Chang, PhD
December 3, 2022
(16)16

6 W’s for Health Measurement
Why

What

Who

Vital signs
Screening

Diagnosis
Efficacy
Monitoring…

Symptoms

Patient

Health status

ClinicianClinicaloutcomes

Caregiver

HRQOL
…

…

When
Pretreatment
Peritreatment

Posttreatment…

WhereHow
SurveyHospital
ClinicHome…

Observation
MedicalDevices
SmartDevices…
…
Chih-Hung Chang, PhD
December 3, 2022
(17)17

Sample Outcome Measures inRehabilitation
Discipline

Measurement Tool

Variables

PhysicalTherapy• Berg Balance Scale• Dynamic Gait Index-Balance-Dynamic gait

OccupationalTherapy• Activity Card Sort
• Action Research Arm Test
• Executive Function Performance Test

-Social, instrumental, and leisure activities-Upper extremity function-Executive function

SpeechLanguage
Therapy• Montreal Cognitive Assessment• Mann Assessment of Swallowing Ability-Cognition-Swallowing

Other• Fatigue Impact Scale• McGill Pain Questionnaire• Hospital Anxiety and Depression Scale-Fatigue-Perceived pain-Anxiety and depression

Chih-Hung Chang, PhD
December 3, 2022
(18)

Sample OT Assessment Areas• Hand Function• Bimanual Tasks• Fine Motor• Grip Strength• Pinch Strength• Consciousness• Executive Function• Neglect• Head Control• Upright Tolerance• Pressure Relief• Fatigue• Transfers Tub/Shower• Participation• …..
Chih-Hung Chang, PhD
December 3, 2022
(19)

Chih-Hung Chang, PhD
December 3, 2022
(20)

What is Infometrics?
Informatics is the science of how to use data, informationand knowledge to improve human health and the delivery ofhealth care services.
Psychometrics is a field of study that incorporates thetechniques and theories involved in psychologicalmeasurements.
Infometrics = An integration of Informatics andPsychometrics
Chih-Hung Chang, PhD
3/19/22Chih-Hung Chang, PhD
December 3, 202221(21)

What is Clinical Infometrics?
• A synthesis of measurement science, datascience, information technology, and evidencebased medicine to guide informed decision
making in real time and to improve symptom anddisease management over time.

3/19/22Chih-Hung Chang, PhD
December 3, 2022(22)Clinical InfometricsTM-based System
A BIG Data System to Support Clinical Research, Education and Practice

Dynamic Electronic
Data Capture System• Item Banks• Computerized AdaptiveTesting

ModernMeasurement Theory

Statistical
Modeling

Evidence Based
Medicine

MedicalInformatics

Methodology-based
Data Analytics System• Large Databases• Predictive Models

Evidence-based Clinical
Decision Support System

Cloud-based Enterprise
Data Warehouse• Individual Clinical Experience• Clinical Practice Guidelines• Evolving Technologies• Information Theory

Chih-Hung Chang, PhD
December 3, 2022
(23)

Measurement
Science

Data Science

InformationTechnologyEvidenceBased Medicine“Measurement Science” Component• “If You Can’t Measure It,
You Can’t Manage It.”
• W. Edwards Deming
W. Edwards Deming (1986). Out of the crisis.
Cambridge, MA: MIT Press.

• “If You Can’t Measure It,
You Can’t Improve It.”
• Peter Drucker• Classical Test Theory• Modern Measurement Theory:
Item Response Theory• Scale development / refinement• Scale linking / equating• Differential item functioning• Item banking• Computerized adaptive testing(CAT)

Chih-Hung Chang, PhD
December 3, 2022
(24)

Item Response Theory (IRT) to the Rescue• A family of mathematical models that describe therelationship between a person’s latent trait (e.g.,ability) being measured and the item characteristics(e.g., difficulty) of an assessment tool.

Less Able

Person Ability

More Able

Easy

Item Difficulty

DifficultChih-Hung Chang, PhD
December 3, 2022
(25)25

Measurement
Science

Data Science

Information
Technology

EvidenceBased Medicine“Data Science” Component• If you can predict it,
you can prevent it.
Learning
Measurement
SystemLearning
Healthcare
SystemObjective Measures

SubjectiveMeasures• Selection of predictive variables(risk factors)• Model Building••••••••

Multivariate linear regression
Logistic regression
Classification and regression trees
Generalized additive models
Structural equation models
Neural networks
Machine learning….

• Model assessment, validation, andrefinement

Social Determinantsof HealthChih-Hung Chang, PhD
December 3, 2022
(26)

Predictive Models• Self Care:
SCI – Nontraumatic

Stroke – Locked-In

NeurologicalDifferent MSGs have differently shaped curves and are admitted at different levels

The expected 50-day change in Self Care for these groups is fairly dramatic.
Chih-Hung Chang, PhDDecember 3, 2022
(27)

Predictive Models• Mobility:
SCI - Traumatic

SCI – NontraumaticOn the other hand, we’d expect to see Mobility gains right away for MSG B

Chih-Hung Chang, PhD
December 3, 2022
(28)

Data Analysis
Descriptive

Diagnostic

Predictive

Prescriptive

Whathappened?

Why did it
happen?

What islikely tohappen inthe future?

What isthe best
course ofaction?
Chih-Hung Chang, PhD
December 3, 2022
(29)29

3D Modeling Process

Chih-Hung Chang, PhD
December 3, 2022
(30)

Measurement
ScienceInformation
Technology

Data Science

EvidenceBased Medicine“Information Technology” Component• Deal with the resources,devices, and methods
required to optimize theacquisition, storage, retrieval,and use of information inhealth and biomedicine•

Health Information Technology (HIT)• Inpatient••••

Online nursing notes, vital sings
Bar-coded data collection
MD order entry, notes
Wireless/handheld access• Outpatient• Online order entry and notes for past few years• Chemotherapy protocol/tracking software• Longitudinal surgical outcomes tracking••• Home/Community
Electronic Medical Records (EMR) /Electronic Health Records (EHR)
Enterprise Data Warehouse (EDW)

Chih-Hung Chang, PhD
December 3, 2022
(31)

Smarter Methodologies and Technologies
Offer Plausible Solutions

Chih-Hung Chang, PhD
December 3, 2022
(32)

MDClone and Synthetic Patient Data at WUSM
• Conduct research withoutan IRB and see raw data in realtime - MDClone synthetic data is
100% unidentified• Reduce HIPAA risks and exposure• Share data and insights without any
risk of patient re-identification

Chih-Hung Chang, PhD
December 3, 2022
(33)

MeasurementSciences

Data ScienceInformation
Science

EvidenceBased Medicine“Evidence-Based Medicine” Component• Apply the best available
evidence gained from thescientific methods andclinical practices to clinicaldecision making• Clinical Practice Guidelines (CPG)• Clinician Preferences• Knowledge Transfer (KT)

Chih-Hung Chang, PhD
December 3, 2022
(34)

Clinical Infometrics Has Great Potential
Psychometrics + Informatics

Medicine
Chronic
Pain

Patient/
FamilyEducation

MedicalEducation

Computational Occupational
Science

CLINICAL
PRACTICEInterventions

Statistics

Competencies

Management

RESEARCH

Sensors

SharedDecision
MakingAssessment

Data Warehouse

Peds

DataSciences

Clinical Practice Guidelines

Outcomes

EDUCATION

AdultsFacultyStudents+Econometrics

Healthy
Aging
CancerOpportunities Unlimited
Chih-Hung Chang, PhD
December 3, 2022
(35)

The Needs to Implement Health
Measurement in Clinical Practice• Clinical practice can be enhanced by theintegration of the assessment of patient-reported
symptoms and concerns into the electronic healthrecord (EHR) and clinical workflows.
• Facilitate patient-clinician communications• Set up realistic treatment goals• Facilitate precision medicine implementation
Chih-Hung Chang, PhD
December 3, 2022
(36)

Implementation Strategies to MakePrecision Medicine Possible• Incorporate and integrate
health measurement into
written protocol document• Make health-related
assessment mandatory• Obtain “buy-in” across alllevels of organization• Train users in test
administration and datatransmission• Develop brief, clear, andeasy-to-administer forms• Attend to patient barriers• Performance status (energylevel)• Severity of illness (prognosis)• Language• Literacy• TimeChih-Hung Chang, PhD
December 3, 2022
(37)

Health, Well-Being, and Precision Medicine
Facilitate

Improve

Patient-PhysicianCommunications

Quality of Care

ReduceTransformMedical Errors

Informed Clinical
Decision Making

Quality of Experience
Health Care Policy

Symptom andDisease Management

Quality of Outcomes
Costs

Resource Utilization

12/10/2022

Quality of Life

Chih-Hung Chang, PhD

38

Chih-Hung Chang, PhD
December 3, 2022
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Team Science Based Health Care

“You can do what I cannot do.
I can do what you cannot do.
Together we can do great things.”-Mother Teresa
Chih-Hung Chang, PhD
December 3, 2022(39)39

The Psychometrics + Informatics (pi) Lab @Washington University in St. Louis

Chih-Hung Chang, PhD
chih-hung.chang@wustl.edu+1 (314) 747-7957@ChihHungChang3

Education

Practice

Research

Chih-Hung Chang, PhD
December 3, 2022
(40)

Health, Well-Being andPrecision Medicine
健康福祉與精準醫療Chih-Hung Chang, PhD

Professor of Occupational Therapy, Medicine, and Orthopaedic Surgery
Washington University School of Medicine in St. Louischih-hung.chang@wustl.edu
2022 3rd Taiwan-Japan Occupational Therapy Joint Symposium | Health and Well-being for Interdisciplinary Talents of Precision Health | 08:45-09:15 am, December 3, 2022