Appendix B
Workshop Agenda
Building Data Capacity for Patient-Centered Outcomes Research: An Agenda for 2021 to 2030
Virtual Workshop 3: A Comprehensive Data Ecosystem for Patient-Centered Outcomes Research
June 14, 2021, 11 am – 5 pm EDT
OBJECTIVES FOR THE WORKSHOP
- Discuss how research and data collaborations can evolve to meet PCOR and data capacity challenges, and how HHS can support effective research and data collaborations
- Identify barriers and potential solutions to the access and use of linked public data, and to the access and use of linked public and private/proprietary data
- Discuss the feasibility and utility of developing a phased-in approach to building the interoperable data capacity for patient-centered outcomes research with existing databases in HHS, other federal departments, and the private sector
| 11:00-11:05 am EDT |
Goals for the Workshop |
| GEORGE ISHAM (Committee Chair), HealthPartners Institute |
| 11:05 am-12:50 pm EDT |
Federal Partners for PCOR |
|
Moderators: JULIE BYNUM, University of Michigan, and GEORGE HRIPCSAK, Columbia University |
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Speakers: MICKY TRIPATHI, Office of the National Coordinator for Health Information Technology ALLISON OELSCHLAEGER, Office of Enterprise Data & Analytics, Centers for Medicare & Medicaid Services MEAGAN KHAU, Office of Minority Health, Centers for Medicare & Medicaid Services MITRA ROCCA, Center for Drug Evaluation and Research, Food and Drug Administration ADI GUNDLAPALLI, Public Health Informatics Office, Centers for Disease Control and Prevention ALISON CERNICH, Eunice Kennedy Shriver National Institute of Child Health and Human Development JACOB KEAN, Salt Lake City VA Health Care System, Department of Veterans Affairs and University of Utah |
|
| 12:50-1:00 pm EDT |
Break |
| 1:00-2:00 pm EDT |
State-Level Data and Data Collaborations |
|
Moderators: ROBERT GOERGE, University of Chicago, and LISA IEZZONI, Massachusetts General Hospital |
|
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Speakers: LYNN BLEWETT, State Health Access Data Assistance Center MARSHA LILLIE-BLANTON, George Washington University TODD GILMER, University of California, San Diego CLAUDIA STEINER, Kaiser Permanente Research |
| 2:00-2:50 pm EDT |
Clinical Trial Networks and Collaborations |
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Moderators: DAVID MELTZER, University of Chicago, and CONSTANTINE GATSONIS, Brown University |
|
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Speakers: RUTH CARLOS, University of Michigan LAURA ESSERMAN, University of California, San Francisco LESLEY CURTIS, Duke University |
|
| 2:50-3:05 pm EDT |
Break |
| 3:05-4:00 pm EDT |
Public-Private Partnerships |
| Moderators: ELIZABETH MCGLYNN, Kaiser Permanente Research, and MIGUEL MARINO, Oregon Health & Science University |
|
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Speakers: ATUL BUTTE, University of California, San Francisco VINCENT MOR, Brown University MARC OVERHAGE, Anthem |
|
| 4:00-4:50 pm EDT |
Collaborations with Patient Groups |
| Moderators: JOHN F.P. BRIDGES, The Ohio State University, and ANGELA DOBES, Crohn’s & Colitis Foundation |
|
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Speakers: PAT FURLONG, Parent Project Muscular Dystrophy JAMES LEWIS, University of Pennsylvania MARC NATTER, Harvard University |
|
| 4:50-5:00 pm EDT |
Wrap-up |
|
GEORGE ISHAM (Committee Chair), HealthPartners Institute |
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