Appendix B
Workshop Agenda
Building Data Capacity for Patient-Centered Outcomes Research:
An Agenda for 2021 to 2030
Virtual Workshop 1: Looking Ahead at Data Needs
MAY 3, 2021, 11 AM–5 PM EDT
OBJECTIVES FOR THE WORKSHOP
- Provide a high-level overview of what kind of data are included in the patient-centered outcomes research data infrastructure.
- Identify key questions that stakeholders are most likely to want answered going forward, including general themes that cut across health conditions and circumstances.
- Discuss implications of the broadened statutory scope for PCOR.
- Identify gaps in what stakeholders need and what the infrastructure allows. Consider both limitations in the existing data and improvements that could be made to new data collections (e.g., at point of care or in prospective studies).
- Discuss what questions cannot be answered and who is not served by the current PCOR data infrastructure.
- Discuss what HHS is best positioned to address and how the agency could maximize resources available for the PCOR data infrastructure (representing 4% of the PCOR trust fund), in the context of the HHS public mission, authorities, programs, and data resources.
11:00-11:05 AM EDT | Goals for the Workshop |
GEORGE ISHAM (Committee Chair) HealthPartners Institute |
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11:05-11:30 AM EDT |
Overview of the Data Infrastructure for Patient-Centered Outcomes Research
Moderator: GEORGE ISHAM |
BENJAMIN SOMMERS, Deputy Assistant Secretary for Health Policy, ASPE NANCY DE LEW, Associate Deputy Assistant Secretary for Health Policy, ASPE SCOTT R. SMITH, Director, Division of Healthcare Quality and Outcomes, ASPE |
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11:30 AM-1:00 PM EDT | PCOR Data Infrastructure Limitations and Opportunities: Disparities and Health Equity Research |
Discussion questions:
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Moderator: OLUWADAMILOLA (LOLA) FAYANJU, Duke University |
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Speakers: | |
KAREN JOYNT MADDOX, Washington University in St. Louis |
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MEGAN MORRIS, University of Colorado MITCHELL LUNN, Stanford University KALEAB ABEBE, University of Pittsburgh THOMAS SEQUIST, Harvard University and Brigham & Women’s Hospital |
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1:00-1:10 PM EDT | Break |
1:10-1:30 PM EDT | PCOR Data Infrastructure Limitations and Opportunities: COVID-19 as Use Case |
Moderator: PAUL TANG, Palo Alto Medical Foundation and Stanford Clinical Excellence Research Center |
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Speaker: DAVID MELTZER, University of Chicago |
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1:30-2:45 PM EDT | Patient Perspectives on Data Needs |
Discussion questions:
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Moderator: ANGELA DOBES, Crohn’s & Colitis Foundation |
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Speakers: | |
REBEKAH ANGOVE, Patient Advocate Foundation GARY EPSTEIN-LUBOW, Brown University ELISABETH OEHRLEIN, National Health Council BRAY PATRICK-LAKE, Evidation Health |
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2:45-3:05 PM EDT | Break |
3:05-4:55 PM EDT | Researcher Perspectives on Data Needs |
Discussion questions:
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Moderator: ELIZABETH MCGLYNN, Kaiser Permanente Research |
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Speakers: | |
ANDREW BAZEMORE, American Board of Family Medicine ROBERT CALIFF, Verily DAVID CELLA, Northwestern University GISELLE CORBIE-SMITH, University of North Carolina SCOTT RAMSEY, Fred Hutch KURT STANGE, Case Western Reserve University |
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4:55-5:00 PM EDT |
Wrap-up GEORGE ISHAM (Committee Chair) HealthPartners Institute |