Submission Type

Original Article

Abstract

Patient-reported outcomes (PRO), or data reported directly by patients on outcomes, provides insights on patients’ experience and perspectives on treatment and outcomes. PROs can be very useful for assessing outcomes that are important to patients as part of comparative effectiveness research (CER) and patient-centered outcomes research (PCOR). In particular, the growing use of electronic PRO (ePRO) in these types of research has the potential to improve the efficiency of data collection and analysis, and to also provide new opportunities to bring meaningful evidence back to decision makers and patients in innovative ways.

In March 2012 the AcademyHealth Electronic Data Methods (EDM) Forum convened a symposium focused on the collection and use of PRO, especially ePRO, for CER and PCOR. A framework of challenges and opportunities for collecting and using PRO in CER and PCOR emerged based on the presentations and discussions. The framework identifies more than 50 challenges, organized by issues when collecting or using PRO around governance, informatics and technology, analytic methods, and the implementation of PRO in learning health systems. Each of these sets of issues are explored and a series of examples are provided that illustrate the possibilities and challenges of using PROs with electronic health data to improve patient outcomes.

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