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Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 1 - Looking Ahead at Data Needs (2021)

Chapter: Appendix B: Workshop Agenda

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Previous Chapter: Appendix A: Biographical Sketches of Committee Members

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Suggested Citation: "Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 1 - Looking Ahead at Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/26297.

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.

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11:00-11:05 AM EDT	Goals for the Workshop
11:00-11:05 AM EDT	GEORGE ISHAM (Committee Chair) HealthPartners Institute
11:05-11:30 AM EDT	Overview of the Data Infrastructure for Patient-Centered Outcomes Research Moderator: GEORGE ISHAM
11:05-11:30 AM EDT	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
11:30 AM-1:00 PM EDT	PCOR Data Infrastructure Limitations and Opportunities: Disparities and Health Equity Research
	Discussion questions: What are the limitations of the PCOR data infrastructure in terms of: disparities in the data, including knowledge about patient outcomes, taking into consideration differences in patient preferences and values challenges associated with using the data to understand disparities and health equity lack of data on some populations What are opportunities and priorities for enhancing data capacity in this area? What data capacity challenges is HHS best positioned to address in the context of their public mission, authorities, programs, and data resources?
	Moderator: OLUWADAMILOLA (LOLA) FAYANJU, Duke University
	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
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
	Speaker: DAVID MELTZER, University of Chicago
1:30-2:45 PM EDT	Patient Perspectives on Data Needs
	Discussion questions: Looking ahead, what are the main data needs? What are the implications of the (recently broadened) statutory scope for PCOR? What questions cannot be answered and who is not served by the current PCOR data infrastructure? What new data sources could be incorporated into the PCOR data infrastructure? What data capacity challenges is HHS best positioned to address in the context of their public mission, authorities, programs, and data resources?
	Moderator: ANGELA DOBES, Crohn’s & Colitis Foundation
	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: Looking ahead, what are the main data needs? What are the implications of the (recently broadened) statutory scope for PCOR? What questions cannot be answered and who is not served by the current PCOR data infrastructure? What new data sources could be incorporated into the PCOR data infrastructure? What data capacity challenges is HHS best positioned to address in the context of their public mission, authorities, programs, and data resources?
	Moderator: ELIZABETH MCGLYNN, Kaiser Permanente Research
	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
4:55-5:00 PM EDT	Wrap-up GEORGE ISHAM (Committee Chair) HealthPartners Institute