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Amy Abernethy, MD PhD Director, Center for Learning Health Care, Duke Clinical Research Institute Director, Duke Cancer Care Research Program, Duke Cancer Institute Duke University Medical Center, Durham, North Carolina, USA August 2013 What we have learned about integrating PROs with EMRs for learning systems? July 23, 2012
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Page 1: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

Amy Abernethy, MD PhDDirector, Center for Learning Health Care, Duke Clinical Research Institute

Director, Duke Cancer Care Research Program, Duke Cancer InstituteDuke University Medical Center, Durham, North Carolina, USA

August 2013

What we have learned about integrating PROs with EMRs for

learning systems?

July 23, 2012

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© 2009 Duke Cancer Care Research Program

Abernethy Funding & Disclosures

AHRQ (CMS), NCI, NIH/NINR, RWJClinical research: Biovex, DARA, Helsinn, MiCo and PfizerClinical research now complete: Alexion, Amgen, Eli Lilly, and KanglaitePending: BMS, GenentechConsultant <$5K annual in past 3 years – Helsinn (2010), Novartis (2011), Pfizer (2012)Corporate Board of Directors – Advoset (education company, including contracts from Novartis), Orange Leaf Associates LLC (IT development company)Pending consultancy – BMS (amount unknown, Co-Chair of Scientific Advisory Committee)Paid leadership roles – American Academy of Hospice & Palliative Medicine (starting March 2013, President)

Page 3: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

SymptomsHealth-related quality of lifeHealth state (e.g., towards utilities/QALYs)Medication use/complianceSatisfaction“Value” of treatment

3

Getting on the same page… PROs

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© 2009 Duke Cancer Care Research Program

LEARNING HEALTH SYSTEMS

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© 2009 Duke Cancer Care Research Program

Converging Themes

Healthcare redesign

Comparative effectiveness research

Heath care quality

Personalized medicine

Patient-centered care

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© 2009 Duke Cancer Care Research Program

Healthcare redesign

Comparative effectiveness research

Heath care quality

Personalized medicine

Patient-centered care

Better Decision-Making

Data-Driven Care

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© 2009 Duke Cancer Care Research Program

Healthcare redesign

Comparative effectiveness research

Heath care quality

Personalized medicine

Patient-centered care

EvidenceDevelopmentImplementation

DataLinkageInputs/outputsAnalysisResults/reports

ValueSystem-definedPatient-defined

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© 2009 Duke Cancer Care Research Program

Perspective is

Fundamental

Healthcare redesign

Comparative effectiveness research

Heath care quality

Personalized medicine

Patient-centered care

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© 2009 Duke Cancer Care Research Program

SYSTEM

Healthcare redesign

Comparative effectiveness research

Heath care quality

Personalized medicine

Patient-centered care

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© 2009 Duke Cancer Care Research Program

PATIENT

Healthcare redesign

Comparative effectiveness research

Heath care quality

Personalized medicine

Patient-centered care

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© 2009 Duke Cancer Care Research Program

SYSTEM & PATIENT

Healthcare redesign

Comparative effectiveness research

Heath care quality

Personalized medicine

Patient-centered care

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© 2009 Duke Cancer Care Research Program

Inputs Outputs

Data elements: Standardized pain intervention info.

Data element: Pain intensity measured on a 0-10 scale

Data element: Pain intensity measured on a 0-10 scale

Data elements: Standardized pain intervention info.

Data element: Pain intensity measured on a 0-10 scale

Data elements: Standardized pain intervention info.

Data element: Pain intensity measured on a 0-10 scale

Data elements: Standardized pain intervention info.

Data element: Pain intensity measured on a 0-10 scale

Metric: # with pain scores / total # patients

Page 13: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

Health care redesign

Health care quality

Comparative effectiveness research

Patient-centered care

Personalized medicine

Inputs Outputs

Data elements: Standardized pain intervention info.

Data element: Pain intensity measured on a 0-10 scale

Data element: Pain intensity measured on a 0-10 scale

Data elements: Standardized pain intervention info.

Data element: Pain intensity measured on a 0-10 scale

Data elements: Standardized pain intervention info.

Data element: Pain intensity measured on a 0-10 scale

Data elements: Standardized pain intervention info.

Data element: Pain intensity measured on a 0-10 scale

Metric: # with pain scores / total # patients

Page 14: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

Inputs Outputs

Data elements: Standardized pain intervention info.

Data element: Pain intensity measured on a 0-10 scale

Data element: Pain intensity measured on a 0-10 scale

Data elements: Standardized pain intervention info.

Data element: Pain intensity measured on a 0-10 scale

Data elements: Standardized pain intervention info.

Data element: Pain intensity measured on a 0-10 scale

Data elements: Standardized pain intervention info.

Data element: Pain intensity measured on a 0-10 scale

Metric: # with pain scores / total # patientsOne health

record and patient report

Page 15: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

What is a Learning Health System?

Organization that learns (quality & PI view)Systematically linked process for evidence generation and implementation (Research / clinical trials)National system of linked data to generate novel insights and monitoringContinuously aggregating datasets to support point of care clinical decision making, personalized medicine, and researchCloser approximation of research and practice so that each informs the otherLearning laboratories of healthcare to optimize and prioritize innovations and solutions

A “learning health care system” (LHCS) leverages recent developments in health information technology and a growing health data infrastructure to access and apply evidence in real time, while simultaneously drawing knowledge from real-world care-delivery processes to promote innovation and health system change on the basis of rigorous research. Ann Intern Med. 2012;157(3):207-210.

Page 16: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

What is a Learning Health System?

Organization that learns (quality & PI view)Systematically linked process for evidence generation and implementation (Research / clinical trials)National system of linked data to generate novel insights and monitoringContinuously aggregating datasets to support point of care clinical decision making, personalized medicine, and researchCloser approximation of research and practice so that each informs the otherLearning laboratories of healthcare to optimize and prioritize innovations and solutions

Page 17: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

Achievable?

Data generation,

use and reuse

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© 2009 Duke Cancer Care Research Program

Achievable?

Data that are meaningful at

the clinical interface

Page 19: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

PRO-BASED LEARNING HEALTH CARE

Page 20: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

Surveys

ClinicalResearch

CentralData

System

DataEntry

PatientConcerns

ClinicalCare

ClinicalQuality

The original story…

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© 2009 Duke Cancer Care Research Program

Rapid Learning Cancer Clinic

Endeavor to obtain “research-quality” clinical data

Equal quality of a clinical trialReliable data can be parsed out for clinical trials, clinical care, quality monitoring, and CER simultaneously

(Abernethy et al, Health Services Research, 2008)

Start off with electronic patient-reported outcomes (ePRO) data, and then build in additional linked datasets over time.

Page 22: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

What a great opportunity – why weren’t they already doing it?

PRO data are historically difficult to collect• Missing data are frequent• Confidence in the patient report• Reliability, validity, accuracy, data quality• Standards are needed

Who is driving the process?• Practical implementation of standardization PRO data

collection in research and clinical care can be difficult• Research or clinical care?• Which researcher or which clinician?• Alignment of incentives

Page 23: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

BEWARE!!!Patient

reported outcomes(PROs)

Page 24: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

BEWARE!!!Data liquidity

Real-time data useData reuseStandards

Culture & IncentivesLearning

Page 25: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

Patient reports standardized data

Coordinated Databases

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© 2009 Duke Cancer Care Research Program

Location and platform agnostic

Page 27: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

•Adapted the PACE System•Review of systems data and practice efficiency

Page 28: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

Choice of other survey instruments

Portfolio of validated instruments• Permission• Paper – electronic equivalence testing

Portfolio of surveys• Quality monitoring and improvement• Satisfaction• Can be changed ad hoc

Can electronically designate what questions a person receives at the patient – day/hour (or encounter) level

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© 2009 Duke Cancer Care Research Program

Patient reports standardized data

Clinical uses - Longitudinal reporting

at POC- ROS & Decision making- Patient education- Triggered interventions

Coordinated Databases

Page 30: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

Page 31: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

Page 32: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

Education matched to clinical needs and patient interest

Page 33: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

Integrating into Process: Distress Triage

Page 34: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

Page 35: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

Missing Data: Encounter-level

0

0.1

0.2

0.3

0.4

0.5

0.6

0.7

0.8

0.9

1

1 3 5 7 9 11 13 15 17 19 21 23 25 27 29 31

Cum

ulat

ive

Prop

ortio

n

Visit Number

No missing data

Completely missing data

Total Visits

79% of encounters3% of encounters

Page 36: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

ePRO

Database

Breast Clinic

GI Clinic

GU Clinic

Thoracic Clinic

Melanom

a Clinic

Sarcom

a Clinic

Rad Onc

Clinic

Trouble BreathingCoughingWheezing

Sit upWalkBathe

Respiratory

0.98‐1.020.94‐0.980.9‐0.94< 0.9

1.02‐1.061.06‐1.1> 1.1

Standardized Ratios

DriveFunction normally

Cook for selfLight work or activity

Hard work or activityRun errands

Household workAttend social activities

Attend a paid job

Functional

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© 2009 Duke Cancer Care Research Program

Research demonstrates…Easy to use, navigate, and read (usability & feasibility)• Patients satisfied with e/Tablets, and would recommend

them to other patients.

• Help patients recall symptoms to report.

ePRO system can be used to collect research-quality data using common, validated instruments (reliability & validity)• Reliability, validity, and

equivalence testing

• Appropriate for clinical trials

Page 38: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

Understand the role of prototyping…

Page 39: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

Page 40: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

PRO Visualization

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© 2009 Duke Cancer Care Research Program

Software/HardwareSoftware/Hardware InstrumentInstrument

ProcessProcess Reporting/AnalyticsReporting/Analytics

Page 42: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

Research Uses- Quality reporting- CER- Hypothesis generation

Clinical Decision Support& Guidelines

Coordinated Databases

Now that we have the data, there are a lot of ways we can use it…

Page 43: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

New datasets can be sequentially added, starting at the patient level, using warehousing or federated models. The key element is patient-level linkage.

ePRO data

Sequentially linked data

Clinical and administrative data

Clinical trials and research related data

Molecular and biological data

Coordinated Databases

Page 44: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

Describing the patient experience

Individual patient

Research reports Clinical operations

21% with pain >4/10 on >2 visits

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© 2009 Duke Cancer Care Research Program

Intervening:Sexual distress

>30% breast, GI, and lung cancer patients with moderate to severe

Correlated with QOL, functional status, symptoms

Clinicians sidestep the issue

Reorganized education and patient care

Developed flexible coping model

ACS funded study

Reinvestment of lessons learned

Page 46: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

Studying new interventions: Pathfinders

Page 47: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

Quality Monitoring: “Scorecards”

Page 48: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

NOW – WHAT ABOUT EHR’S

Page 49: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

PRO data entered in separate charting area

Lab data embedded directly into chart note

Page 50: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

• Less than ideal interface and data entry

Page 51: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

• Variable collection of PROs

Page 52: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

• Less than ideal display when viewing multiple PROs

Page 53: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

Wait for the document to load…

Select each page individually…

Highly variable quality…

Page 54: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

EHR Attached PPACT Provider Feedback Form

Page 55: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

Scoring or compilation of relevant

assessments

Outside Vendor

Kaiser Permanente Online

or paper collection

EMR Provider Summary Report

Page 56: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

Page 57: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

The Goals

Patient portals, home interfaces, interfaces in the clinicsApps, web-based solutions, etc with APIs to transfer dataInformation to support care in real-timePROs that drive a number of solutions• Education, quality monitoring, triage

Alignment with process• One size doesn’t fit all

Risk management

Page 58: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

What do we need?

Tools that make sense• How is my patient doing?• Data that are valuable for multiple purposes• Just because I can change the questions around, should I?

Patient participation in serial assessmentIntegration into clinical process• Alignment of incentives• Engage providers• Improve clinical productivity

Data governance• Data interoperability

Page 59: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

© 2009 Duke Cancer Care Research Program

LESSONS LEARNED

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© 2009 Duke Cancer Care Research Program

Four interchangeable componentsImportance of user interface and reportingMust meet patient and clinical needs first• Research with serviceEfficient and high quality approach for data collection• Missingness is a critical signal• Data visualization

60

ePRO environment for Learning Health Care: Lessons learned

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© 2009 Duke Cancer Care Research Program

Achievable?

Data generation,

use and reuse

Page 62: What we have learned about integrating PROs with EMRs for ... Slides 08-23-13.pdf · prioritize innovations and solutions A “learning health care system” (LHCS) leverages recent

Contact

Amy P. Abernethy, MDDirector, Duke Center for Learning Health CareDirector, Duke Cancer Care Research Program

[email protected]


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