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Integrating Patient-Reported Outcomes in Electronic Health Records:
Presentation of a Users’ Guide and Discussion of
StandardizationMay 25-26, 2017
Hyatt Regency Crystal City
Claire Snyder, PhD, Principal InvestigatorAlbert Wu, MD, MPH, Co-Principal Investigator
Funded by the Patient-Centered Outcomes Research Institute
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Multi-Purpose PROs
Assess PROs
Evaluate Care Quality
Use in Clinical PracticeInform Quality Improvement
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Multi-Purpose PROs
Assess PROs
Evaluate Care Quality
Use in Clinical PracticeInform Quality Improvement
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Clinician & Patient View Report
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Source: Jensen et al, J Oncol Pract. 2014;10:e215-222.
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• Helps clinicians and researchers interested in implementing PRO assessment to aid patient care
• Includes– Considerations– Options– Resource requirements– Relative advantages and
disadvantagesAvailable at: http://www.isoqol.org/UserFiles/2015UsersGuide-Version2.pdf
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Topics Covered1. Identifying the goals for collecting PROs in
clinical practice2. Selecting the patients, setting, and timing of
assessments3. Determining which questionnaire(s) to use4. Choosing a mode for administering and scoring
the questionnaire5. Designing processes for reporting results6. Identifying aids to facilitate score interpretation7. Developing strategies for responding to issues
identified by the questionnaires8. Evaluating the impact of the PRO intervention
on the practice
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Multi-Purpose PROs
Assess PROs
Evaluate Care Quality
Use in Clinical PracticeInform Quality Improvement
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Aggregate Data Across Patients
Beth Wilson
Chris Miller
Jodi Anderson
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Quality Reporting to Compare Providers
0102030405060708090
100
Our Practice Practice A Practice B Practice C
Worst Pain≥4 ≥ Moderate Nausea
Perc
enta
ge
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ASCO Pilot-Test of PROPerformance Measures
Source: Basch et al, J Oncol Pract. 2014; 10:209-211.
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Multi-Purpose PROs
Assess PROs
Evaluate Care Quality
Use in Clinical PracticeInform Quality Improvement
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How do we turn PROMs into remedies?
Slide courtesy of John Browne, PhDUniversity College – Cork
020
4060
8010
0
HR
QO
L sc
ale
5 10 15 20 25 30 35 40 45 50 55 60 65Number of operations
Slide courtesy of John Browne, PhD, University College – Cork
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100
5 10 15 20 25 30 35 40 45 50 55 60 65Number of operations
Equal in shape + size (unclothed)
Breasts ‘linedup ’unclothed
An interpretable PROM for breast reconstruction?The Breast-Q.
Shape when clothed
0
Equal in size(unclothed)
Slide courtesy of John Browne, PhD, University College – Cork
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Assess PROs
Evaluate Care Quality
Use in Clinical PracticeInform Quality Improvement
Multi-Purpose PROs
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Multi-Purpose PROs
Assess PROs
Evaluate Care Quality
Use in Clinical PracticeInform Quality Improvement
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Aggregate Data Across Patients
Beth Wilson
Chris Miller
Jodi Anderson
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Describing Impact of Treatment
This figure describes the physical function of patients who undergo this procedure on average. Scores of 0 represent poor physical function, and scores of 100 represent good physical function. On average, patients who undergo this surgery have a score of 30 before the procedure. Immediately following the procedure (1 week after surgery), their function has decreased a little to a score of 25. However, physical function then improves over the next 3 months to achieve a score of 50, with a little additional improvement to 55 at the point 6 months after surgery.
The general population of a similar age has a physical function score of 60.Thus, on average, this procedure improves patients’ physical function substantially, but not quite to the level of the general population.
Good
Poor
Phy
sica
l Fun
ctio
n
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http://www.pcori.org/assets/2013/11/PCORI-PRO-Workshop-EHR-Landscape-Review-111913.pdf
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http://www.pcori.org/assets/2013/11/PCORI-PRO-Workshop-EHR-Landscape-Review-111913.pdf
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Rationale• Increasing interest in the topic of PROs in EHRs
– PCORI-sponsored meeting reviewing the use of PROs in EHRs (November 2013)
• http://www.pcori.org/assets/2013/11/PCORI-PRO-Workshop-EHR-Landscape-Review-111913.pdf
– NIH collaboratory meeting on barriers to routine collection of PROs for EHRs (January 2015)
• Need for:– Guidance on the steps involved in integrating PROs
in EHRs– Opportunity for voluntary consortia to collect PRO-
EHR data to enable pooling
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Project Goals• Provide practical guidance on how to
implement PROs in EHRs• Facilitate formation of consortia that will
voluntarily collect PROs using standardized approaches to enable data pooling
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Project Phase 1: Planning
• Formed a Steering Group to advise on the overall project plan
• Developed strategy for meeting long-term goals
• Identified questions to be addressed in the PRO-EHR Users’ Guide
• Circulated question list for comment• Outlined next steps
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Steering Group
*We appreciate the previous service on the Steering Group of Jamie Skipper, PhD, and Caroline Coy, MPH, from the ONCHIT
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Project Phase 2: Implementation
• Identify Working Group Members• In-Person Meeting to Discuss Section
Outlines• Develop Draft Sections• Working/Steering Group Review and
Comment on Draft Sections• Circulate Draft for Comment• Hold Public Meeting
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Working Group
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Available at: http://www.pcori.org/document/users-guide-integrating-patient-reported-outcomes-electronic-health-records
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Topics Covered1. What strategy will be used for integrating PROs in EHRs?2. How will the PRO-EHR system be governed?3. How can users be trained and engaged?4. Which populations and patients are most suitable for collection
and use of PRO data, and how can EHRs support identification of suitable patients?
5. Which outcomes are important to measure for a given population?
6. How should candidate PRO measures be evaluated?7. How, where, and with what frequency will PROs be
administered?8. How will PRO data be displayed in the EHR?9. How will PRO data be acted upon?10. How can PRO data from multiple EHRs be pooled?11. What are the ethical and legal issues?
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Content
• Considerations involved in integrating PROs in EHRs
• Options offered for each consideration• Relative advantages/disadvantages
described for each option• Case example descriptions (optional)• Key information gaps/research questions• Useful references/resources
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Similar to ISOQOL Users’ Guide• ISOQOL Users’ Guide
focuses on use of PROs in Clinical Practice, in general
• PRO-EHR Users’ Guide focuses specifically on integrating PROs in EHRs
• ISOQOL is a collaborating partner
Available at: http://www.isoqol.org/UserFiles/2015UsersGuide-Version2.pdf
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AND…you don’t have to pick just one option from each course!
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Additional Notes
• Addresses patient-reported outcomes specifically– Direct reports of symptoms, functioning,
health-related quality of life, and so on using standardized questionnaires
– Not other types of patient-generated data (e.g., alcohol use) or other sources of patient-generated data (e.g., fitness trackers)
• Though many of the considerations are the same
• Users’ Guide, not Technical Manual
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Agenda
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And They Provided Patient-Centered Care Happily Ever After