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

Abstract

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.

Figure 1

The convergence of patient-reported outcome (PRO) measures, electronic health records (EHR) development, and comparative effectiveness research (CER) movement. Note the increased adoption of electronic solutions for patient-reported outcome measures, the electronic conversion of medical records and emphasis on patient-centered solutions; and, the shift in emphasis of comparative effectiveness research to more patient-centered outcomes research (PCOR). HSM=Health Status Measurement HRQOL=Health Related Quality of Life PRO = Patient Reported Outcome PROMIS = Patient-Reported Outcomes Measurement Information System PCOR=Patient Centered Outcomes Research PHR=Personal Health Record CER=Comparative Effectiveness Research EHR=Electronic Health Record Circles indicate measurement of PROs Triangles indicate the comparative effectiveness research field Squares indicate the predominant forms of medical records

Figure 2

An idealized conceptual system architecture for an interoperable city/state/region/nation-wide HIE-based PRO platform that can be used for various analytics including CER. Orange: Typical HIE data sources; Dark green: Population health data sources; Light green: PRO data repositories; Light gray/dashed border: sample systems; Arrows with middle circle: PRO messaging standardization required. For the sake of simplicity the diagram does not show existing relationships among non-HIE components (e.g., connection between lab systems and EHRs) and alternative access points for CER researchers (e.g., CER researcher accessing isolated EHR-PRO data directly). Abbreviations: EHR=Electronic Health Record, PRO=Patient Reported Outcome, HIE=Health Information Exchange, CAT=Computerized Adaptive Test