On March 15-16, 2012 the EDM Forum convened a group of approximately 50 stakeholders for a two-day meeting at the Kaiser Permanente Center for Total Health in Washington, DC to discuss the collection and use of patient-reported outcomes (PRO) for CER and patient-centered outcomes research (PCOR).

Meeting Objectives
  • Discuss the development, validation, and analysis of generic and disease‐specific PROs in CER.
  • Propose and refine a framework for addressing the challenges and opportunities for incorporating PROs into CER and PCOR.
  • Building from the framework, explore opportunities for a multi‐platform collaborative test project.


Please contact edmforum@academyhealth.org.

The EDM Forum 2012 March Symposium was a closed meeting.

The EDM Forum is supported by the Agency for Healthcare Research and Quality (AHRQ) through the American Recovery & Reinvestment Act of 2009, Grant U13 HS19564-01.

Formal Agenda
Participant List
Meeting Summary

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Thursday, March 15th
8:30 AM


Murray Ross, Kaiser Permanente Institute for Health Policy
Ned Calonge, The Colorado Trust
Lisa Simpson, AcademyHealth
Gurvaneet Randhawa, Agency for Healthcare Research and Quality

8:30 AM - 9:00 AM

9:00 AM

Stakeholder Perspectives: The Evolution of PROs and the Development and Utilization of PROs for CER

Amy Abernethy, Duke University
David Cella, Northwestern University (PROMIS)
John Ware, University of Massachusetts Medical School
Nicole Tapay, National Coalition for Cancer Survivorship

9:00 AM - 10:30 AM

10:45 AM

Practical Considerations for Collecting and Using PRO for Decision‐Making and Clinical Practice: Tools, Measures, and Implementation Issues

Albert Wu, Johns Hopkins University
Adam Wilcox, Columbia University
Marion Sills, University of Colorado, Denver
Dave Clifford, PatientsLikeMe

10:45 AM - 12:15 PM

1:00 PM

Vendor Town Hall: Incorporating PRO Collection into EHRs and Clinical Workflow

Sonya Eremenco, United BioSource Corporation
Emuella Flood, Oxford Outcomes
David Van Sickle, Asthmapolis

1:00 PM - 2:15 PM

2:30 PM

Breakout Discussions: PRO Challenge Framework for CER & PCOR

EDM Forum

2:30 PM - 4:00 PM

4:45 PM

Wrap‐up & Next Steps

Ned Calonge, The Colorado Trust

4:45 PM - 5:00 PM

Friday, March 16th
8:00 AM

Opening Remarks

Ned Calonge, The Colorado Trust

8:00 AM - 8:15 AM

8:15 AM

Report Back: Updated PRO Challenge Framework for CER & PCOR

Erin Holve, AcademyHealth

8:15 AM - 9:45 AM

10:00 AM

Breakout Discussions: Development of a Collaborative Project Using PRO for CER & PCOR Focused on Asthma and Depression

EDM Forum

10:00 AM - 11:30 AM

12:00 PM

Wrap‐up & Next Steps

Ned Calonge, The Colorado Trust

12:00 PM - 12:30 PM