Page 61 Cite

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

Page 62 Cite

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
1:20–3:00 pm EDT	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?

Page 63 Cite

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
4:55-5:00 pm EDT	GEORGE ISHAM (Committee Chair), HealthPartners Institute

Page 64 Cite

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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