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Helen Burstin, MD, MPHChief Scientific Officer, NQF
HealthMeasures Users ConferenceSeptember 27, 2017
HealthMeasures and the Future of PRO-based
Performance Measures
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National Quality Strategy
2
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U.S. Policy Environment: From Volume to Value
3
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NQF Prioritization Framework
Priority Measures
Driver Measures
National Priorities
4
Improvement Strategies
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5
NQF Prioritization CriteriaCriterion Description
Outcome-focused Preference for outcome measures and measures
with strong link to improved outcomes and costs
Improvable and actionable Preference for actionable measures
with demonstrated need for improvement and evidence-based
strategies for doing so
Meaningful to patients and caregivers Preference for
person-centered measures with meaningful and understandable results
for patients and caregivers
Support systemic and integrated view of care
Preference for measures that reflect care that spans settings,
providers, and time to ensure that care is improving within and
across systems of care
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6
National PrioritiesNational Priorities
Optimal health (including function, survival)
Patient experience (including care coordination, shared
decisionmaking)
Preventable harm/complications
Prevention/healthy behaviors
Total cost/high value care
Access to needed care
Equity of care
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7
High-Impact OutcomesHigh Impact Outcomes
Well-being and function
Patient experience (including care coordination, shared
decisionmaking)
Preventable harm/complications
Prevention/healthy behaviors
Total cost/high value care
Access to needed care
Equity of care
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Moving to value-based health care demands a better way of
measuring outcomes
NQMC Outcome Measures
2,000
0
1,500
1,000
500
Process1,181
Total1,958
Patient Exp427
Outcome218
Other
46
32
43
79
Patient-reported health status
Clinician-reported health status
Other
Adverse events
Mortality13
Not true outcomes or duplicate measures (E.g., blood pressure
control)
5
All NQMC Measures
Outcomes, especially patient-reported outcomes are significantly
under-represented in available measures1
ICHOM
Porter, ME. Et al.N Engl J Med 2016; 374:504-506 2)
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9
Guiding Principles: Selection of Patient Reported Outcomes
Psychometric Soundness Person-centered Meaningful Actionable
Implementable
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The Pathway from PROs to PRO-PMs
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PRO
• Identify the quality performance issue (include broad input)•
Identify outcomes meaningful to target population and amenable to
change• Determine whether (PRO) is the best way to assess the
outcome of interest
PROM
• Identify existing PROMs for measuring the outcome in the
target population• Select PROM suitable for use in performance
measurement (e.g., reliable,
valid, feasible)• Use the PROM in real world with the intended
target population and setting
PRO-PM
• Specify the outcome performance measure (e.g., average change,
percentage improved or meeting a benchmark)
• Test PRO-PM for reliability, validity, and threats to validity
(e.g., measure exclusions; missing data; poor response rate; risk
adjustment; discrimination of performance; equivalence of results
across PROMs)
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PRO-PM Example: Depression Remission
11
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RWJF Project: Amplifying the Patient Voice
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Explore how to best integrate the patient experience into the
development of performance measures driven by
outcomes that are meaningful and relevant to patients.
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ObjectivesAmplifying the Patient’s Voice
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Explore novel approach to inform measurement
Identify, prioritize, contextualize quality-of-life outcomes
Establish foundational model for developing measures using
aggregated data from online communities
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PatientsLikeMe/NQF PRO Stakeholder Listening Sessions
14
Assess value and costs in
more complete way.
Empower patients to engage in
decisions and choose according
to preferences.
Increase ability to connect what we pay for to health
improvement.
Uncover problems only patients can
evaluate.
More meaningful
data.
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About PatientsLikeMe
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Our mission is to improve the lives of patients through new
knowledge derived from shared real-world experiences and
outcomes
• Founded in 2004 as a direct response to family’s experience
with chronic disease
• Online, open, patient-facing community for patients with life
changing conditions
• Started in ALS and expanded to all conditions• Deep patient
data and experience in ~40 life-
changing conditions
• Free to join and free of advertising
• 40+ million structured data points • 4+ million free-text
posts• 15+ PROMs
• 500,000+ patients• 2,700+ conditions
• 100+ peer-reviewed publications• Patient-generated taxonomy•
FDA Research Collaboration• iCarbonX Alliance/DigitalMe
Patients Data Insights
Slide courtesy of PatientsLikeMe.
https://www.patientslikeme.com/
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Patient Data Informatics
16
Basic Information (age, sex, etc.)
Diseases, Conditions(early signs, diagnosis status, etc.)
Treatments & Side Effects(Rx, OTC, Supp., non-drug,
etc.)
General & Specific Symptoms(onset, severity status,
etc.)
Quality of Life & Behavior Status(all patients, some disease
specific)
Outcome Measures of Disease(disease dependent)
Patient-generated narrative data in forum discussions, journals
and feeds
Emerging data source experiments(wearable/sensors, EHRs, claims,
'omics, specimens)
Engagement
Knowledge
Evidence
Standards
Data Integrity
Empowerment
Patient voice translated into computable clinically relevant
data elements
Data codified using: • ICD10• SNOMED• MedDRA• ICF
Slide courtesy of PatientsLikeMe.
https://www.patientslikeme.com/
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ApproachAmplifying the Patient’s Voice
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Qualitative and quantitative patient experience data▫ Patient
Profiles▫ Survey Data▫ Forum & Free Text Data Prioritize
outcomes of greatest
importance
COPD2,500
Patients
MS51,000
Patients
RA10,000
Patients
PLM Communities
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Key FindingsAmplifying the Patient’s Voice
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Measures that focus on commonsymptoms may be more valuable
thanones that focus on specific diagnoses
Online patient community offered real-world solutions▫ Improved
data quality▫ Representative patient experience▫ Illuminated
patient concerns▫ Prioritized symptoms
Pain Fatigue
AnxiousMood
Insomnia
Depressed Mood
Click here to access the study report Measuring What Matters to
Patients: Innovations in Integrating the Patient Experience into
Development of Meaningful Performance Measures.
http://www.qualityforum.org/WorkArea/linkit.aspx?LinkIdentifier=id&ItemID=85771
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Complexity of Care: PatientsLikeMe COPD Analysis
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Patient’s overview
Earlier Later
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Swedish Rheumatology Quality Register: Clinician Module
2015 2016
RxPrescribed
Patient ReportedOutcomes
ClinicalOutcomes
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Overall Survival Results of a Trial Assessing Patient-Reported
Outcomes for Symptom Monitoring During Routine Cancer Treatment
(Basch et al)
Overall Survival Among Patients With Metastatic Cancer Assigned
to Electronic Patient-Reported Symptom Monitoring During Routine
Chemotherapy vs Usual
JAMA. Published online June 04, 2017.
doi:10.1001/jama.2017.7156
Symptom Reporting and Survival
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Why we measure?Improve healthcare quality
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The Quality Imperative
Not everything that counts can be counted, and not everything
that can be counted counts
~William Bruce Cameron
But…..
You can’t improve what you don’t measure
~ W. Edwards Deming
Quality Imperative
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25
Helen Burstin, MD, MPH, [email protected]
@HelenBurstin
HealthMeasures and the Future of PRO-based Performance
MeasuresNational Quality StrategyU.S. Policy Environment: �From
Volume to ValueSlide Number 4Slide Number 5Slide Number 6Slide
Number 7Moving to value-based health care demands a better way of
measuring outcomesGuiding Principles: Selection of Patient Reported
Outcomes�The Pathway from PROs to PRO-PMs�PRO-PM Example:
Depression RemissionRWJF Project: Amplifying the Patient
VoiceObjectives�Amplifying the Patient’s VoicePatientsLikeMe/NQF
PRO Stakeholder Listening SessionsAbout PatientsLikeMePatient Data
InformaticsApproach�Amplifying the Patient’s VoiceKey
Findings�Amplifying the Patient’s VoiceComplexity of Care:
�PatientsLikeMe COPD AnalysisSlide Number 20Swedish Rheumatology
Quality Register: Clinician Module�Slide Number 22Slide Number
23The Quality ImperativeSlide Number 25
