Measure once, cut twice--adding patient-reported outcome measures to the electronic health record for comparative effectiveness research

J Clin Epidemiol. 2013 Aug;66(8 Suppl):S12-20. doi: 10.1016/j.jclinepi.2013.04.005.


Objective: This article presents the current state of patient-reported outcome measures and explains new opportunities for leveraging the recent adoption of electronic health records to expand the application of patient-reported outcomes in both clinical care and comparative effectiveness research.

Study design and setting: Historic developments of patient-reported outcome, electronic health record, and comparative effectiveness research are analyzed in two dimensions: patient centeredness and digitization. We pose the question, "What needs to be standardized around the collection of patient-reported outcomes in electronic health records for comparative effectiveness research?"

Results: We identified three converging trends: the progression of patient-reported outcomes toward greater patient centeredness and electronic adaptation; the evolution of electronic health records into personalized and fully digitized solutions; and the shift toward patient-oriented comparative effectiveness research. Related to this convergence, we propose an architecture for patient-reported outcome standardization that could serve as a first step toward a more comprehensive integration of patient-reported outcomes with electronic health record for both practice and research.

Conclusion: The science of patient-reported outcome measurement has matured sufficiently to be integrated routinely into electronic health records and other electronic health solutions to collect data on an ongoing basis for clinical care and comparative effectiveness research. Further efforts and ideally coordinated efforts from various stakeholders are needed to refine the details of the proposed framework for standardization.

Keywords: Comparative effectiveness research; Electronic health record; Health information technology; Patient centered outcomes research; Patient-report outcome; Quality of life; Survey research.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Comparative Effectiveness Research / economics
  • Comparative Effectiveness Research / methods*
  • Comparative Effectiveness Research / trends
  • Data Collection / standards*
  • Data Collection / trends
  • Electronic Health Records / standards*
  • Electronic Health Records / trends
  • Evidence-Based Practice / trends
  • Humans
  • Medical Informatics / standards*
  • Medical Informatics / trends
  • Models, Theoretical
  • Outcome Assessment, Health Care / methods
  • Outcome Assessment, Health Care / standards*
  • Outcome Assessment, Health Care / trends
  • Patient Participation / trends
  • Patient Satisfaction*
  • Quality of Life
  • Reproducibility of Results
  • Systems Integration
  • United States