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Health Information Technology and Healthcare Information System01:30

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The nursing history captures and records the patient's health status, so that a care plan evolves to meet the patient's individual needs. The nursing health history is a part of the initial assessment. A comprehensive history covers all health dimensions and plays a significant role in the assessment process. A comprehensive history includes the patient's biographical information, reasons for seeking health care, expectations, present and past health history, medications, and...
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Measuring the Functional Abilities of Children Aged 3-6 Years Old with Observational Methods and Computer Tools
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Developing a data infrastructure for a learning health system: the PORTAL network.

Elizabeth A McGlynn1, Tracy A Lieu2, Mary L Durham3

  • 1Kaiser Permanente Center for Effectiveness and Safety Research, Pasadena, California, USA.

Journal of the American Medical Informatics Association : JAMIA
|May 14, 2014
PubMed
Summary
This summary is machine-generated.

The Patient Outcomes Research To Advance Learning (PORTAL) network enhances healthcare research infrastructure by integrating diverse data sources and patient expertise. This enables large-scale comparative effectiveness research and clinical trials across multiple health systems.

Keywords:
colon cancercomparative effectiveness researchcongenital heart defectsdata sharingdistributed databasesobesity

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Area of Science:

  • Health Services Research
  • Comparative Effectiveness Research
  • Clinical Trials

Background:

  • The Patient Outcomes Research To Advance Learning (PORTAL) network unites four major healthcare delivery systems.
  • It builds upon established relationships to create a national research network infrastructure.

Purpose of the Study:

  • To enhance current research capabilities through data model expansion and patient-reported data integration.
  • To implement robust multi-site data governance and integrate the PCORnet PopMedNet platform.
  • To establish patient cohorts for large-scale observational studies and pragmatic clinical trials.

Main Methods:

  • Expanding the scope of a common data model to include patient-reported outcomes.
  • Implementing standardized multi-site data governance procedures.
  • Integrating the PCORnet PopMedNet platform across participating research centers.
  • Forming patient cohorts for specific diagnoses: colorectal cancer, severe congenital heart disease, and overweight/obesity with diabetes/pre-diabetes.

Main Results:

  • Development of an enhanced national network infrastructure for healthcare research.
  • Systematic incorporation of patient-reported data into research methodologies.
  • Establishment of procedures for multi-site data governance and platform integration.
  • Creation of diverse patient cohorts for comparative effectiveness research and clinical trials.

Conclusions:

  • PORTAL is advancing the infrastructure for large-scale, multi-site health research.
  • The network's enhancements facilitate comparative effectiveness research and pragmatic clinical trials.
  • Collaborations with clinical and patient experts are key to generating real-world evidence across diverse populations.