Feedback Request: Users’ Guide for Integrating Patient-Reported Outcomes in Electronic Health Records

Johns Hopkins University


Johns Hopkins is working on a contract for the Patient-Centered Outcomes Research Institute (PCORI) to develop a “Users’ Guide for Integrating Patient-Reported Outcomes (PROs) in Electronic Health Records (EHRs),” which focuses on the considerations involved with integrating PROs in EHRs, which can be used for individual patient management, quality assessment and improvement, and research.

This initiative builds off of the International Society for Quality of Life Research (ISOQOL) “Users’ Guide for Assessing Patient-Reported Outcomes in Clinical Practice,” but focuses specifically on integrating PROs in EHRs. Notably, this project is focusing specifically on PROs (patients’ direct reports of symptoms, functioning, health-related quality of life, and so on), rather than patient-generated health data more generally. Like the ISOQOL Users’ Guide, this PRO-EHR Users’ Guide will address a number of questions and, rather than providing one “right” answer, offer a range of options, along with their relative advantages and disadvantages. Users can then determine which approach fits best within their environment. The project will conclude with a public meeting during which the Users’ Guide will be presented and which will offer the opportunity for formation of voluntary networks who may decide to collect their PRO-EHR data to enable pooling.

The Steering Group has drafted the question list to be addressed in the PRO-EHR Users Guide. Comments are invited on this question list. Please email with (1) any comments on the content to be covered and (2) any resources that could be helpful in developing the Users’ Guide. The deadline for comments is JULY 23, 2016.