Building Data Capacity for Patient-Centered Outcomes Research : Priorities for the Next Decade

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. Table of ContentsFront MatterSummary1 Committee Charge and Process2 Background on the PCOR Data Infrastructure and Office of the Secretary PCOR Trust Fund3 Priority Areas for the PCOR Data InfrastructureAppendix A: Biographical Sketches of Committee MembersAppendix B: Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 1Looking Ahead at Data NeedsAppendix C: Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 2Data Standards, Methods, and PolicyAppendix D: Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 3A Comprehensive Ecosystem for PCORAppendix E: Office of the Secretary PCOR Trust Fund Project Portfolio