Building Data Capacity for Patient-Centered Outcomes Research Interim Report 1 - Looking Ahead at Data Needs (2021) / Chapter Skim
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1 Introduction
1 Introduction
Pages 7-18
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From page 7... ...
. The PCOR data infrastructure provides decision m akers with objective, scientific evidence on the effectiveness of treatments, services, and other interventions used in health care. This research is frequently focused on analyzing existing data to study questions and provide objective information for the purpose of informing real-world health care decisions.
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From page 8... ...
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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, the Centers for Medicare & Medicaid Services, the Food and Drug Administration, the Health Resources and Services Administration, the Indian Health Service, the National Institutes of Health, the Office of the Chief Technology Officer, the Office of the National Coordinator for Health Information Technology, and the Substance Abuse and Mental Health Services Administration. The Leadership Council provides input on priorities for the portfolio, including projects to fund.
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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; Food and Drug Administration data on the safety of medications and medical devices; and CDC data on births and deaths provided by state public health authorities. The framework describes the relationship between the data sources and the current key functionalities and focus areas (middle row)
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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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data infrastruc ture that ensures productivity, protects the patient and the patient's data, ensures that evidence generations remains in the center of PCOR, and ensures the use of agreed upon standards and services. Services refer to resources that entities can employ on demand to capture, store, or exchange either PCOR data or evidence through a centrally hosted model provided remotely (such as through the internet)
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From page 14... ...
The study is part of a broader initiative by ASPE intended to update the strategic plan in light of the reauthorization of the PCOR Trust Fund and advances in health information technology and interoperability tools in recent years. The study is a collaboration of three units of the National Academies: the Committee on National Statistics, the Board on Health Care Services, and the Computer Science and Telecommunications Board.
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• Assess anticipated changes to health care priorities and priorities for health data and their impact on building data capacity into the fore seeable future, as identified by the Assistant Secretary for Planning and Evaluation. • Evaluate the feasibility and utility of developing a phased-in approach to building the interoperable data capacity for patient-centered outcomes research with existing databases in the Department of Health and Human Services, other federal departments, and the private sector in a phased approach, such as projects identified in the Cures Act Title III Section 4003 (Interoperability)
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Information about the workshop was disseminated through National Academies' mailing lists and on the project website. To collect additional stakeholder input, members of the public were invited to provide comments on topics related to the workshop (or any other topic related to the
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Because this is an interim report, the committee's conclusions at this stage are big-picture conclusions, which will be integrated with additional input over the course of the study.
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