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Building Data Capacity for Patient-Centered Outcomes Research Interim Report 2–Data Standards, Methods, and Policy (2022) / Chapter Skim
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Summary
Pages 1-6

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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 second in a series of three interim reports, summarizes the discussion and committee conclusions from the second workshop, which focused on data standards, methods, and policies that could make the PCOR data infrastructure more useful in the years ahead.
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From page 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...
... CONCLUSION 3-1: The ability to adopt a longitudinal, compre hensive perspective of an individual's journey could open new oppor­ tunities for patient-centered outcomes research. The shift could be facilitated by focusing on efforts to • s implify integration of data across the research data ecosystem; • address challenges posed by the limitations associated with health identifiers; • incorporate person-generated data into health data systems; and • leverage real-world data to expand the timeline view of a person's health-related experiences.
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From page 4...
... DATA POLICY AND OTHER DATA INFRASTRUCTURE CONSIDERATIONS A theme that emerged from the workshop was the need to involve the people and communities whose data are being used in decisions about the data collection and data use throughout the entire research lifecycle. This is essential for building trust, which increases willingness to participate and, in turn, the likelihood that the data that are obtained will be complete, reliable, representative, and relevant to diverse stakeholders.
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From page 5...
... SUMMARY 5 1996, are outdated and would benefit from a critical review and updating to facilitate PCOR while preventing misuses of the data. CONCLUSION 4-2: This is an opportune time to revisit and update the legislation and rules governing data privacy and the sharing of data for research.
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Key Terms

  • data infrastructure
  • data standards
  • pcor data
  • emerging data
  • data capacity

  • research process
  • includes data
  • administrative data
  • underlying data
  • provided data

  • data ecosystem
  • clinical data
  • linking data
  • build data
  • data policy

  • research lifecycle
  • research documentation
  • entire research
  • research broadly
  • longitudinal research

  • payer records
  • questions patients
  • work related
  • existing laws
  • workshop highlighted

  • aspe asked
  • holistic experiences
  • committee organized
  • diverse stakeholders
  • requires matching


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