Building Data Capacity for Patient-Centered Outcomes Research: An Agenda for 2021 to 2030

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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.

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368 pages · 6 x 9 · paperback
ISBN Paperback: 0-309-28711-1
ISBN Ebook: 0-309-28712-X
DOI: https://doi.org/10.17226/26489

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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.

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Interim

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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 third in a series of three interim reports, summarizes the discussion and committee conclusions from the third workshop, which focused on ways of enhancing collaborations, data linkages, and the interoperability of electronic databases to make the PCOR data infrastructure more useful in the years ahead. Participants in the workshop included researchers and policy experts working in these areas.

Publication information

96 pages · 6 x 9 ·
ISBN Ebook: 0-309-27367-6
DOI: https://doi.org/10.17226/26396

Suggested citation

National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 3 - A Comprehensive Ecosystem for PCOR. Washington, DC: The National Academies Press.

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Interim

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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.

Publication information

86 pages · 6 x 9 ·
ISBN Ebook: 0-309-09329-5
DOI: https://doi.org/10.17226/26298

Suggested citation

National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 2–Data Standards, Methods, and Policy. Washington, DC: The National Academies Press.

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Interim

Read Online

Download PDF

Request an exam or desk copy

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 first in a series of three interim reports, summarizes the discussion and committee conclusions from the first workshop, focused on looking ahead at data user needs over the next decade. The workshop included representatives of patient groups with a wide reach and researchers with broad research interests as well as an understanding of the PCOR infrastructure.

Publication information

88 pages · 6 x 9 · paperback
ISBN Paperback: 0-309-26824-9
ISBN Ebook: 0-309-09324-4
DOI: https://doi.org/10.17226/26297

Suggested citation

National Academies of Sciences, Engineering, and Medicine. 2021. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 1 - Looking Ahead at Data Needs. Washington, DC: The National Academies Press.

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