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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 One - Looking Ahead at Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/26297.
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Page 45
Suggested Citation:"Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report One - Looking Ahead at Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/26297.
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Page 46
Suggested Citation:"Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report One - Looking Ahead at Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/26297.
×
Page 47
Suggested Citation:"Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report One - Looking Ahead at Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/26297.
×
Page 48

Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

PREPUBLICATION COPY, Uncorrected Proofs 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. 11 AM-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 45

PREPUBLICATION COPY, Uncorrected Proofs 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: o disparities in the data, including knowledge about patient outcomes, taking into consideration differences in patient preferences and values o challenges associated with using the data to understand disparities and health equity o 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 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: 46

PREPUBLICATION COPY, Uncorrected Proofs  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 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 47

PREPUBLICATION COPY, Uncorrected Proofs SCOTT RAMSEY, Fred Hutch KURT STANGE, Case Western Reserve University 4:55-5:00 PM EDT Wrap-up GEORGE ISHAM (Committee Chair) HealthPartners Institute 48

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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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