Appendix B
Workshop Agenda
Building Data Capacity for Patient-Centered Outcomes Research: An Agenda for 2021 to 2030
Virtual Workshop 2: Data Standards, Methods, and Policy
May 24, 2021, 11 am–5 pm EDT
OBJECTIVES FOR THE WORKSHOP
- Identify data standards and methods that can make the PCOR data infrastructure more useful for research and other data needs.
- Identify data policies that are needed to facilitate the continued development and operation of the PCOR data infrastructure.
- Discuss what HHS is best positioned to address and support, 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 |
11:05 am–1:05 pm EDT | PCOR Data Standards |
Discussion questions:
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Moderators: | |
GEORGE HRIPCSAK, Columbia University, and DAVID MELTZER, University of Chicago | |
Speakers: | |
JOHN HALAMKA, Mayo Clinic | |
SHAUN GRANNIS, Regenstrief Institute | |
EVELYN GALLEGO, EMI Advisors | |
RACHEL RICHESSON, University of Michigan | |
PATRICK RYAN, Janssen Research and Development | |
VG VINOD VYDISWARAN, University of Michigan | |
1:05–1:20 pm EDT | Break |
1:20–3:00 pm EDT | PCOR Methods |
Discussion questions:
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Moderators: | |
MIGUEL MARINO, Oregon Health & Science University, and CONSTANTINE GATSONIS, Brown University | |
Speakers: | |
NIGAM SHAH, Stanford University | |
SHARON-LISE NORMAND, Harvard University | |
SHERRI ROSE, Stanford University | |
LARA MANGRAVITE, Sage Bionetworks | |
NIROSHA MAHENDRARATNAM LEDERER, Aetion | |
3:00–3:15 pm EDT | Break |
3:15–4:55 pm EDT | Data Policies and Other Data Infrastructure Considerations |
Discussion questions:
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Moderators: | |
DEBORAH ESTRIN, Cornell Tech and PAUL TANG, Palo Alto Medical Foundation and Stanford Clinical Excellence Research Center |
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Speakers: | |
PAMELA RILEY, Government of the District of Columbia |
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ABEL KHO, Northwestern University |
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JULIA ADLER-MILSTEIN, University of California, San Francisco |
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DEVEN MCGRAW, Ciitizen |
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DON DETMER, University of Virginia |
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4:55-5:00 pm EDT | Wrap-up |
GEORGE ISHAM (Committee Chair), HealthPartners Institute |
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