October 13, 2017: Users’ Guide for Integrating Patient-Reported Outcomes in Electronic Health Records


Claire Snyder, PhD
Professor of Medicine, Oncology, and Health Policy & Management
Johns Hopkins Schools of Medicine and Public Health

Albert W. Wu, MD, MPH, FACP
Professor and Director
Center for Health Services & Outcomes Research
Johns Hopkins Bloomberg School of Public Health


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


PCORI; Pragmatic clinical trial; Clinical research; Electronic health record; EHR; Patient-reported outcomes; PROs; ISOQOL

Key Points

  • According to the FDA, a patient-reported outcome (PRO) is any report of the status of a patient’s health condition that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else. PROs have many purposes, including clinical practice use and evaluation of care quality.
  • The International Society for Quality of Life Research (ISOQOL) created a user guide to give researchers strategies for implementing PRO assessments and identifying issues in care.
  • A PCORI Steering Committee identified questions to be addressed regarding integrating PROs in electronic health records (EHRs), and formed a Working Group to create content for a PRO-EHR Users’ Guide. This guide covers such topics as how EHRs can identify eligible patients, what outcomes to measure, how to train users, and ethical and legal issues.
  • Electronic health records can be used to select patients for whom a provider or system is accountable, or to search patients by a defined condition, surgery, or treatment.

Discussion Themes

By aggregating data across patients in a practice, a provider can look at and chart averages in terms of patient outcomes and use that data to inform future care.

There are low, high, and hybrid models of integration that allow healthcare providers to determine which strategy works best for their needs in terms of flexibility of PRO assessment and amount of upkeep.

Multiple stakeholders stand to gain with PRO-EHR integration processes, and it will be important to plan value propositions to incentivize each type of stakeholder for data to be collected.

For More Information

For more information on PROs, visit the Living Textbook http://bit.ly/2ym4R79 #pctGR


@Collaboratory1, @hopkins_GIM, @johnshopkinsSPH, @ISOQOL, @PCORI, #HopkinsCHSOR, #EHRs, #clinicalresearch, #pctGR

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