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Linking clinical research data to population databases.

Linda S Edelman1, Jia-Wen Guo, Alison Fraser

  • 1Linda S. Edelman, PhD, RN, is Assistant Professor; and Jia-Wen Guo, PhD, RN, is Assistant Professor, College of Nursing, University of Utah, Salt Lake City. Alison Fraser, MSPH,is Senior Database Analyst, University of Utah Huntsman Cancer Institute, Salt Lake City. Susan L. Beck, PhD, APRN, FAAN, is Professor and Robert S. and Beth M. Carter Endowed Chair in Nursing, College of Nursing, University of Utah, Salt Lake City.

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Summary
This summary is machine-generated.

Linking clinical nursing research data to population databases is feasible, enabling long-term outcome studies. Successful data linkage can improve future research by incorporating linkage plans early.

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Area of Science:

  • Nursing Research
  • Health Informatics
  • Population Health

Background:

  • Clinical nursing research is often constrained by study funding timelines.
  • Linking research data to population databases allows for the study of long-term post-study outcomes.

Purpose of the Study:

  • To assess the feasibility of linking clinical research participant data with population databases.
  • To exemplify this linkage using an oncology nursing trial linked to state population databases for long-term outcome analysis.

Main Methods:

  • Participant data from a completed oncology symptom management trial were linked to the Utah Population Database and Utah Emergency Department Database.
  • The integrated dataset included demographics, cancer details, baseline data, and post-study outcomes from population records.

Main Results:

  • A high linkage rate of 89.6% (129 out of 144 participants) was achieved.
  • Linked participants showed high rates of hospitalization (73%) and emergency department visits (60%), with 28% identified as deceased.

Conclusions:

  • Successful linkage of nursing research data to population databases is possible for analyzing long-term outcomes like hospitalizations, ED visits, and mortality.
  • Integrating linkage and human subjects protection plans into the initial study design can enhance data linkage success.