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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. Building Data Capacity for Patient-Centered Outcomes Research contains findings and conclusions in the areas that could benefit from being prioritized as part of ASPE's work, and offers input on strengthening the overall framework for building the data infrastructure over the coming years. The committee authoring this report also issued three interim reports, which summarized discussions from three workshops, and are included as appendices in the final report.
Contents
- The National Academies of SCIENCES • ENGINEERING • MEDICINE
- COMMITTEE ON BUILDING DATA CAPACITY FOR PATIENT-CENTERED OUTCOMES RESEARCH: AN AGENDA FOR 2021 TO 2030
- COMMITTEE ON NATIONAL STATISTICS
- BOARD ON HEALTH CARE SERVICES
- COMPUTER SCIENCE AND TELECOMMUNICATIONS BOARD
- Acknowledgments
- Summary
- FOCUS ON THE PERSON AS A WHOLE
- INCLUDING HIGH-PRIORITY TYPES OF DATA IN THE DATA INFRASTRUCTURE
- ADDRESSING FRAGMENTATION
- DATA NOT DESIGNED TO ADVANCE KNOWLEDGE
- GOVERNING DATA ACCESS
- DATA ACCESS OPTIONS
- ADVANCING RESEARCH PRACTICES AND ANALYTIC METHODS
- PROJECT SELECTION TO SUPPORT THE DATA INFRASTRUCTURE FRAMEWORK
- DISSEMINATION OF RESULTS AND USE OF THE DATA INFRASTRUCTURE
- UPDATING THE DATA INFRASTRUCTURE FRAMEWORK
- 1. Committee Charge and Process
- 2. Background on the PCOR Data Infrastructure and Office of the Secretary PCOR Trust Fund
- 3. Priority Areas for the PCOR Data Infrastructure
- INCLUDING HIGH-PRIORITY TYPES OF DATA IN THE DATA INFRASTRUCTURE
- ADDRESSING FRAGMENTATION
- DATA NOT DESIGNED TO ADVANCE KNOWLEDGE
- GOVERNING DATA ACCESS
- DATA ACCESS OPTIONS
- ADVANCING RESEARCH PRACTICES AND ANALYTIC METHODS
- PROJECT SELECTION TO SUPPORT THE DATA INFRASTRUCTURE FRAMEWORK
- DISSEMINATION OF RESULTS AND USE OF THE DATA INFRASTRUCTURE
- UPDATING THE DATA INFRASTRUCTURE FRAMEWORK
- Appendix A. Biographical Sketches of Committee Members
- Appendix B. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 1–Looking Ahead at Data Needs
- Appendix C. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 2–Data Standards, Methods, and Policy
- Appendix D. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 3–A Comprehensive Ecosystem for PCOR
- Appendix E. Office of the Secretary PCOR Trust Fund Project Portfolio
Suggested citation:
National Academies of Sciences, Engineering, and Medicine. (2022). Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. https://doi.org/10.17226/26489
Digital Object Identifier: https://doi.org/10.17226/26489
Library of Congress Control Number: 2022941427
Additional copies of this publication are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu.
Printed in the United States of America
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