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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.
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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.

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.
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11:00-11:05 AM EDT Goals for the Workshop

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

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

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.
×

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

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.
×
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

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.
×
Page 63
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.
×
Page 64
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.
×
Page 65
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.
×
Page 66
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The Office of the Assistant Secretary for Planning and Evaluation (ASPE), in partnership with other agencies and divisions of the United States Department of Health and Human Services, coordinates a portfolio of projects that build data capacity for conducting patient-centered outcomes research (PCOR). PCOR focuses on producing scientific evidence on the effectiveness of prevention and treatment options to inform the health care decisions of patients, families, and health care providers, taking into consideration the preferences, values, and questions patients face when making health care choices.

ASPE asked the National Academies to appoint a consensus study committee to identify issues critical to the continued development of the data infrastructure for PCOR. The committee's work will contribute to ASPE's development of a strategic plan that will guide their work related to PCOR data capacity over the next decade.

As part of its information gathering activities, the committee organized three workshops to collect input from stakeholders on the PCOR data infrastructure. This report, the first in a series of three interim reports, summarizes the discussion and committee conclusions from the first workshop, focused on looking ahead at data user needs over the next decade. The workshop included representatives of patient groups with a wide reach and researchers with broad research interests as well as an understanding of the PCOR infrastructure.

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