Advancing the Collection and Use of Patient-Reported Outcomes (PROs) through Health Information Technology (IT)

Supporting knowledge sharing through standardizing the integration of Patient Reported Outcomes data in electronic health records and other health IT solutions. 
  • Agency for Health Research and Quality (AHRQ)
  • Office of the National Coordinator for Health Information Technology (ONC) 
Start Date
  • 1/15/2017


  • Collection of Patient-Provided Information
  • Use of Clinical Data for Research


STATUS: Active Project


The patient’s perspective is central to healthcare decisions affecting prevention, diagnosis, treatment, and long-term care. Patient Reported Outcomes (PROs) critically inform patient-centered outcomes research (PCOR) and can inform clinical management of individuals, shared decision making, patient self-management support, care planning, goal setting, and goal attainment. PROs offer a complementary perspective to that of clinician assessments, and may provide greater insights into health status, function, symptom burden, adherence, health behaviors, and quality of life. Therefore, while the focus of this project is to develop research infrastructure for PCOR, it will simultaneously provide data needed to improve care delivery and patient experiences. Altogether this will support a learning health system where research routinely enables and contributes to improved patient-centered outcomes.

While some electronic health records (EHRs) are currently able to capture some structured PRO data, this information is not commonly collected at the point of care. Thus, these data are not routinely available for both clinical care and research. Moreover, standards do not exist for collecting and integrating PRO data into health IT systems, thereby limiting the ability to easily share these data across health systems for research or other purposes such as benchmarking for quality improvement. 


This is a cross-agency project between Agency for Healthcare Research and Quality (AHRQ) and The Office of the National Coordinator for Health (ONC).

This project aims to standardize the integration of PRO data in EHRs and other health IT solutions to support the sharing of this information. This standardized integration and the resulting consistency across products can be achieved by using data element and data capture standards. This would allow for PRO assessments to be conducted and easily shared regardless of what EHR or health IT solution is being used. It would also allow for consistency in interpretation and would clarify the meaning of results for patient-provider communication and shared decision-making. This effort will also support the use of APIs (application programming interface), defined as a set of protocols and tools for building software applications for data exchange. Finally, the project will incentivize the development of user-friendly applications for PRO collection that make use of the refined/developed standards and/or implementation specifications.

The objective of this project is to develop technical tools for collecting and integrating PRO assessments into EHRs or other health IT products. In order to meet the objective, the project aims to do the following:

  • Refining and/or harmonizing health IT standards and implementation specifications that can be used to support sharing of PRO data through application programming interfaces (APIs) and relevant health IT products for research.

  • Supporting the development of user-friendly, PRO-collection applications that utilize the health IT standards, implementation specifications, or APIs.

  • Implementing private/public partnerships for pilot-testing these technical tools in a health system that supports both healthcare delivery and research.