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

By: Committee on National Statistics and Board on Health Care Services and Computer Science and Telecommunications Board and Division on Engineering and Physical Sciences and Division of Behavioral and Social Sciences and Education and National Academies of Sciences, Engineering, and Medicine and Health and Medicine Division and Committee on Building Data Capacity for Patient-Centered Outcomes Research: An Agenda for 2021 to 2030

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Synopsis: 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.