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.
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. https://doi.org/10.17226/26297.
|2 Health Disparities Data Needs||19-28|
|3 Patient Perspectives on Data Needs||29-40|
|4 Researcher Perspectives on Data Needs||41-56|
|Appendix A: Biographical Sketches of Committee Members||57-62|
|Appendix B: Workshop Agenda||63-66|
|Appendix C: Biographical Sketches of Speakers||67-74|
The Chapter Skim search tool presents what we've algorithmically identified as the most significant single chunk of text within every page in the chapter. You may select key terms to highlight them within pages of each chapter.
The National Academies Press (NAP) has partnered with Copyright Clearance Center's Rightslink service to offer you a variety of options for reusing NAP content. Through Rightslink, you may request permission to reprint NAP content in another publication, course pack, secure website, or other media. Rightslink allows you to instantly obtain permission, pay related fees, and print a license directly from the NAP website. The complete terms and conditions of your reuse license can be found in the license agreement that will be made available to you during the online order process. To request permission through Rightslink you are required to create an account by filling out a simple online form. The following list describes license reuses offered by the National Academies Press (NAP) through Rightslink:
Click here to obtain permission for the above reuses. If you have questions or comments concerning the Rightslink service, please contact:
Rightslink Customer Care
Tel (toll free): 877/622-5543
To request permission to distribute a PDF, please contact our Customer Service Department at 800-624-6242 for pricing.
To request permission to translate a book published by the National Academies Press or its imprint, the Joseph Henry Press, pleaseclick here to view more information.