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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 Two - Data Standards, Methods, and Policy. Washington, DC: The National Academies Press. doi: 10.17226/26298.
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Page 48
Suggested Citation:"Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report Two - Data Standards, Methods, and Policy. Washington, DC: The National Academies Press. doi: 10.17226/26298.
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Page 49
Suggested Citation:"Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report Two - Data Standards, Methods, and Policy. Washington, DC: The National Academies Press. doi: 10.17226/26298.
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Page 50

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  PREPUBLICATION COPY, Uncorrected Proofs    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 11:05 AM–1:05 PM PCOR Data Standards EDT   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: 48  

  PREPUBLICATION COPY, Uncorrected Proofs    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? 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? 49  

  PREPUBLICATION COPY, Uncorrected Proofs    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, Ciitizien DON DETMER, University of Virginia 4:55-5:00 PM EDT Wrap-up GEORGE ISHAM (Committee Chair), HealthPartners Institute   50  

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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 second in a series of three interim reports, summarizes the discussion and committee conclusions from the second workshop, focused on data standards, methods, and policies that could make the PCOR data infrastructure more useful in the years ahead. Participants in the workshop included researchers and policy experts working in these areas.

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