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Building Data Capacity for Patient-Centered Outcomes Research Interim Report 3 - A Comprehensive Ecosystem for PCOR (2022) / Chapter Skim
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Pages 1-4

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From page 1...
... As part of its information-gathering activities, the committee organized three workshops to collect input from stakeholders on the PCOR data infrastructure, which includes a variety of types of data, such as clinical data, research data, administrative data from payer records, and patientprovided data. 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, 1
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From page 2...
... The first report centered on emerging data needs1 and the second report on data standards, methods, and policy.2 The conclusions included in this interim report are based primarily on the input collected as part of the workshop, background documentation received from ASPE and other public sources, and the committee members' synthesis and expert judgment regarding the input received. As an interim report based on one in a series of information-gathering activities, the scope of this report is narrowly focused on a subset of key topics relevant to the committee's charge.
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From page 3...
... STATE-LEVEL DATA AND COLLABORATIONS Many states have robust data collection systems and can produce infor­ mation that is useful to state and local policy makers. State-generated data are also valuable at the national level, including for answering broader questions about issues that may be influenced by local policy, such as health care access and disparities.
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From page 4...
... Disease registries directed by patient groups can be a particularly useful additional source of data, one that provides information that would not be available to researchers otherwise. CONCLUSION 6-1: Patient groups can be helpful partners in all aspects of Patient-Centered Outcomes Research, including engaging patients in order to improve research participation and the impact of results.
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Key Terms

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  • clinical trials
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  • pcor focuses
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  • infrastructure developments
  • including engaging


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