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Building Data Capacity for Patient-Centered Outcomes Research Priorities for the Next Decade (2022) / Chapter Skim
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Summary
Pages 1-10

The Chapter Skim interface presents what we've algorithmically identified as the most significant single chunk of text within every page in the chapter.
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From page 1...
... . 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.
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From page 2...
... FOCUS ON THE PERSON AS A WHOLE The committee noted the importance of taking a holistic view of an indi­vidual's health rather than limiting the perspective, and the data ­acquired, to that captured about an individual in a clinical setting. Accord ingly, the committee believes that broadening the focus of the PCOR data infrastructure from patient-centered to person-centered would enhance the goals and data requirements needed to conduct meaningful outcomes re search.
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From page 3...
... A person-centered approach incorporates into the data critical influences beyond the health care processes when people are patients. The distinction between a person-centered approach and a patient-­ centered one is not intended to imply that the roles of patient and person are necessarily separate but rather to underscore the broader context that might be missed when the focus is exclusively on the person as a patient.
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From page 4...
... Expanding data linkages could greatly increase the usefulness of these data for research. CONCLUSION 3-7: Collaboration among federal agencies and be tween federal agencies and other partners to address barriers that hinder data linkages, such as the limitations associated with the lack of unique health identifiers and patient or person matching, will improve the PCOR data infrastructure.
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From page 5...
... CONCLUSION 3-9: Taking an international perspective is important for the development of a PCOR data infrastructure; in particular, the infrastructure focused on standards would benefit from building on work that happens internationally. CONCLUSION 3-10: ASPE, in collaboration with other partners and stakeholders, could add significant value in the area of standards for PCOR by: • continuing to promote the development of a data infrastructure and an implementation strategy that facilitate the use of standards and access to the data; • convening stakeholder meetings to enhance communication and work toward developing a common language for standards; •  facilitating access to the data and collaborations with existing organi­zations working in this area; • leading efforts to catalogue and exemplify data standards and ana lytic standards for a holistic view of individuals' health; and • increasing consistency in the use of standards for data interoper ability and element definitions.
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From page 6...
... Data availability could be increased by exploring challenges at the local level, including variable interpretations of federal laws and regulations, and by identifying approaches to address those challenges. DATA ACCESS OPTIONS While a variety of mechanisms exist for accessing PCOR-relevant data, these processes could all benefit from additional streamlining to facilitate data use.
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From page 7...
... CONCLUSION 3-17: PCOR products would be enhanced by investing in methods that are essential for the conduct of PCOR, such as includ ing persons throughout the research continuum, addressing problems of missing data, improving study designs, ensuring appropriate infer ence from methods utilizing observational data, and addressing struc tural bias in data systems and studies. CONCLUSION 3-18: Applying best practices to the analytic methods used in PCOR is important to facilitate the reliability and reproduc ibility of study results.
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From page 8...
... CONCLUSION 3-25: Dissemination and translation of the research findings could be greatly enhanced by using forms of communication that are relevant to those outside the research community. UPDATING THE DATA INFRASTRUCTURE FRAMEWORK While it is clear that the projects funded through the Office of the Secretary PCOR Trust Fund (OS-PCORTF)
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From page 9...
... CONCLUSION 3-26: Explicitly focusing on improved health as the goal of the PCOR infrastructure may be a useful way to prioritize projects and target infrastructure investments. Finally, the committee's work underscored the need for additional feedback and metrics that would enable ASPE to assess the impact of the investments in the data infrastructure.
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Key Terms

  • pcor data
  • data capacity
  • pcor infrastructure
  • data access
  • data linkages

  • infrastructure framework
  • successful data
  • governing data
  • data sharing
  • access data

  • data platforms
  • data standards
  • pcor trust
  • health disparities
  • advancing research

  • committee identified
  • stakeholder input
  • project selection
  • trust fund
  • emerging data

  • expanding data
  • observational data
  • data limitations
  • exemplify data
  • highlighting data

  • mortality data
  • share data
  • data critical
  • includes data
  • facilitate data


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