Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 2–Data Standards, Methods, and Policy (2022)

Chapter: Appendix B: Workshop Agenda

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Suggested Citation: "Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 2–Data Standards, Methods, and Policy. Washington, DC: The National Academies Press. doi: 10.17226/26298.
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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
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Suggested Citation: "Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 2–Data Standards, Methods, and Policy. Washington, DC: The National Academies Press. doi: 10.17226/26298.
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11:05 am–1:05 pm EDT PCOR Data Standards
Discussion questions:
  • What data standards could make the PCOR data infrastructure more useful for research and other data needs? What data standards are likely to become more relevant looking forward? What needs to be prioritized?
  • What role can ASPE play in supporting effective standards to build data capacity that supports PCOR studies? What characteristics of HHS’s public mission, programs, or authorities could be leveraged?
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:
  • What emerging methods are likely to be most relevant for the PCOR data infrastructure looking forward? What are the most important research and data challenges?
  • What computing advances, innovative health information technologies, and methodologies might present opportunities going forward?
  • What role can ASPE play in supporting effective methods for PCOR studies? What characteristics of HHS’s public mission, programs, or authorities could be leveraged?
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Suggested Citation: "Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 2–Data Standards, Methods, and Policy. Washington, DC: The National Academies Press. doi: 10.17226/26298.
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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:
  • What data policies are likely to be most relevant for the PCOR data infrastructure looking forward?
  • What role can ASPE play in supporting these policies for PCOR studies? What characteristics of HHS’s public mission, programs, or authorities could be leveraged?
Moderators:

DEBORAH ESTRIN, Cornell Tech and PAUL TANG, Palo Alto Medical Foundation and Stanford Clinical Excellence Research Center
Speakers:

PAMELA RILEY, Government of the District of Columbia

ABEL KHO, Northwestern University

JULIA ADLER-MILSTEIN, University of California, San Francisco

DEVEN MCGRAW, Ciitizen

DON DETMER, University of Virginia
4:55-5:00 pm EDT Wrap-up

GEORGE ISHAM (Committee Chair), HealthPartners Institute
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Suggested Citation: "Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 2–Data Standards, Methods, and Policy. Washington, DC: The National Academies Press. doi: 10.17226/26298.
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Suggested Citation: "Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 2–Data Standards, Methods, and Policy. Washington, DC: The National Academies Press. doi: 10.17226/26298.
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Suggested Citation: "Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 2–Data Standards, Methods, and Policy. Washington, DC: The National Academies Press. doi: 10.17226/26298.
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Suggested Citation: "Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 2–Data Standards, Methods, and Policy. Washington, DC: The National Academies Press. doi: 10.17226/26298.
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Suggested Citation: "Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 2–Data Standards, Methods, and Policy. Washington, DC: The National Academies Press. doi: 10.17226/26298.
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Next Chapter: Appendix C: Biographical Sketches of Workshop Speakers
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