Building Data Capacity for Patient-Centered Outcomes Research Interim Report 2–Data Standards, Methods, and Policy (2022) / Chapter Skim
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1 Introduction
1 Introduction
Pages 7-16
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This research is fre quently f ocused on analyzing existing data to address questions and provide objective information for the purpose of informing real-world health care decisions. BACKGROUND The legal framework that established funding for research on the outcomes and effectiveness of treatments and health care interventions dates back to the 2003 Medicare Prescription Drug, Improvement, and Modernization Act.
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of the Public Health Service Act instructed the Secretary of HHS to: … provide for the coordination of relevant Federal health programs to build data capacity for comparative clinical effectiveness research, including the development and use of clinical registries and health outcomes research networks, in order to develop and maintain a comprehensive, interoperable data network to collect, link, and analyze data on outcomes and effective ness from multiple sources including electronic health records.2 1 https://www.ssa.gov/OP_Home/ssact/title11/1181.htm. 2 https://aspe.hhs.gov/collaborations-committees-advisory-groups/os-pcortf/about-os-pcortf.
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As the coordinating agency for the data infrastructure investment portfolio across HHS agencies, ASPE guides the PCOR data infrastructure's strategic framework and vision, sets funding priorities, and coordinates interagency workgroups. ASPE's work is assisted by a Leadership C ouncil for the PCOR Trust Fund, which includes representatives from other HHS agencies, including the Administration for Children and Families, the Administration for Community Living, the Assistant Secretary for Preparedness and Response, AHRQ, the Centers for Disease Control and Prevention (CDC)
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Examples of primary data collected as part of research studies include data from clinical trials and national health surveys. Other examples of data sources include Medicare or Medicaid claims data; quality or outcomes data collected by health care providers for the purposes of improving health care value; FDA data on the safety of medications and medical devices; and CDC data on births and deaths provided by state public health authorities.
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FIGURE 1-2 ASPE's strategic framework for the patient-centered outcomes research data infrastructure. 11 SOURCE: Workshop presentation by ASPE, May 3, 2021.
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Researchers will be able to capture the range of variables influencing health outcomes and link clinical and other types of data (e.g., other clinical data, claims data, participant-provided information, and environmental data) required for research regardless of where the participant goes.
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ISSUES FOR THE COMMITTEE ASPE asked the National Academies of Sciences, Engineering, and Medicine to appoint a consensus study committee and identify issues critical to building data capacity for PCOR and for generating new evidence to inform health care decisions. The input provided by the committee will contribute to ASPE's strategic planning for their work related to the data infrastructure over the next decade.
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The workshops focused on key topics that the committee believed would particularly benefit from broad input from a variety of data users and other stakeholders. The committee's conclusions from each workshop are summarized in a series of interim reports, of which the first centered on emerging data needs.
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The committee will issue interim reports after each public workshop with conclusions, and will produce a final written report with findings and conclusions to help guide a future course to continue building the data capacity for patient centered research. All reports will follow institutional guidelines and be subject to the National Academies review procedures prior to release.
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, using a public input form available on the National Academies website. OVERVIEW OF THE REPORT This report is organized around the three main sessions of the workshop: Chapter 2 discuses data standards, Chapter 3 is centered on research methods, and Chapter 4 describes discussions focused on data policies and related infrastructure considerations.
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