Using PROs in Comparative Effectiveness Research. Albert W. Wu, MD, MPH AcademyHealth Baltimore June 24, 2013

Transcription

1 Using PROs in Comparative Effectiveness Research Albert W. Wu, MD, MPH AcademyHealth Baltimore June 24, 2013

2 Sample Physician Note on Patient Reported Outcomes Patient doing well.

3 Just Add PROs (AW imitating Meryl Streep imitating Julia Child)

4 Convergence of PRO + CER + EHR Patient-Centeredness PRO, PROMIS 2001, 2012 HSM HRQOL 1980s PCOR 2011 PHR, MyChart 2012 Electronic-ness CHART 1960s CER 1990s EHR 2000 Albert Wu 2012

5 Just Add PROs (Clinical practice) Randomized controlled trials Observational research Cohort studies Registries Electronic Health Records (Quality improvement)

6 Electronic Methods

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8 Measure Once, Cut Twice 8

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10 Epic Customers (from a list of 270) Baylor Cedars-Sinai Cleveland Clinic Dartmouth-Hitchcock Geisinger Kaiser Permanente NYU Langone Ohio State Oregon Health & Science Partners Healthcare Rush Stanford UCLA UC Davis University of Chicago University of Iowa University of Maryland University of Michigan University of Pennsylvania University of Pittsburgh University of Virginia University of Wisconsin Yale 45% of the U.S. population is cared for in a health system that uses Epic as the electronic health record.

11 Shaywitz D, Epic Challenge: What The Emergence of an EMR Giant Means For the Future of Healthcare Innovation. Forbes June 9, 2012.

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13 Taskforce for the Systematic Collection of PRO Multidisciplinary PRO investigators Clinicians Information technology PROs for clinical research Lower barrier to entry Registries PROs for clinical practice PROs for comparative effectiveness research, quality measurement, quality improvement, public health

14 Issues Selection Administration Reporting/Interpretation Analysis Access/Confidentiality

15 Selection: Clinician Website Clinician can schedule a patient a survey

16 Selection In the library, e.g., PROQOLID In use, e.g., International Prostate Sympton Score (IPSS) In the public domain?

17 Proprietary Instruments Charge for use EHRs unaccustomed Only public domain/ copyleft? Tracking and charging feasible in future

18 Administration: Patient Website Patient survey sample question

19 Patient Website Patient is presented with survey(s) to complete

20 Administration Instructions for administration Equivalent of fasting blood glucose or AM cortisol Specific time or place Is there an app for that? Text alerts for PRO to be completed

21 Interpretation What is the cutoff? What is a panic value? What is a meaningful change? Tacit clinician knowledge: capture / codify? What can I do?

22 Johns Hopkins Medicine EPR

23 Clinician Views Report & Comments

24 Analysis Metadata Location Mode of administration Completion with assistance Translated Can assist with Risk adjustment/stratification Missing data Unit of analysis

25 Confidentiality Need-to-know Are some data elements different? Patient satisfaction Who should be able to see the results? Aggregated only? Shared with patients? If data are collected via MyChart for research, should they be visible to clinicians?

26 Coordination Hospital Health system All users of a common EHR Geo-politically defined Role for Accountable Care Organizations (ACO)? Regional health information exchange (HIE)? Other collaboration?

27 Coordination Hospital Health system All users of a common EHR Geo-politically defined Role for Accountable Care Organizations (ACO)? Regional health information exchange (HIE)? Other collaboration?

28 Governance Little precedent Which PROs get used? In research Clinically What format? What interpretation applied? Who is in charge?

29 My Health-eVet MyChart Noncustomizable Patient Portal EHR-based Patient Portal PRO data EHR-based Patient Portal PRO data VistA EHR 1 EHR 2 EHR EHR n Epic PRO data PRO data PRO data Public Health Data Claims Data Other Data HIE Population Health Layer PRO module CER Researcher Extra Lab Systems Extra Rx Systems Extra Imaging Systems THE BIG PICTURE Local PRO Research Repository Standalone PRO Portal Standalone Patient Portal PRO data PROMIS CATs PatientViewpoint MS HealthVault

30 Conclusion PRO data collected both for research and care can be used for CER/PCOR Ethical, methodologic, governance issues Research and partnering needed to facilitate use

31 Acknowledgments Claire Snyder Jodi Segal Hadi Kharazzi

32 Acknowledgments Claire Snyder Jodi Segal Hadi Kharazzi Meryl Streep/Julia

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