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Advancing the Collection and Use of Patient-Reported Outcomes Through Health Information Technology

Project Final Report (PDF, 1.64 MB)

The coordination of human and technical processes using a systems approach is crucial to ensure the successful use of PRO data.

Project Details -
Completed

The patient’s perspective is central to healthcare decisions around prevention, diagnosis, treatment, and long-term care. Patient-reported outcomes (PROs) critically inform patient-centered outcomes research and support clinical management of individuals, shared decision making, patient self-management support, goal setting, and goal attainment. Standardized collection of PROs through patient electronic assessment and subsequent integration into electronic health records (EHRs) has the potential to improve system-wide comparisons of health outcomes, population health monitoring, and new opportunities to evaluate the effectiveness of alternative interventions and treatments. Despite their importance to patient care, PROs are not collected routinely. One promising solution to increasing use of PROs may be via mobile applications (apps) developed with standards, which could allow for smoother integration of that data into EHRs or other health information technology (IT) systems. This research, led by MedStar Health, supported the development of electronic applications that enable the collection of diverse PRO measures in a standardized manner across health providers and systems to enable broader data sharing for clinical care and research. In addition, the team pilot tested the winning app of the Agency for Healthcare Research and Quality’s (AHRQ's) 2018 Step Up App Challenge competition, the PRISM (PROMIS Reporting and Insight System from Minnesota) app. This app allows patients to complete PROMIS physical function measures and other PROMIS measures. PROMIS measures are a set of person-centered measures that evaluate and monitor physical, mental, and social health. Finally, the researchers modified an existing app by incorporating Fast Healthcare Interoperability Resources (FHIR) technical specifications and pilot tested the modified app to collect and integrate standardized PRO physical function data into different EHRs. The modified app and the PRISM app were pilot tested in a total of 18 primary and specialty care practices across MedStar and Capital Area Primary Care Research Network (CAPRICORN), with 10 patients targeted to enroll and use the app at each site. Participating sites were of various size, geographic locations, with varied workflows, and using three different EHRs.

The specific aims of the research were as follows:

  • Collect and report stakeholder input regarding the functionality and usability requirements for the development of user-friendly applications that collect standardized PRO data and factors affecting their implementation. 
  • Design and execute a plan for pilot testing the winning app from AHRQ's Step Up Challenge competition in a mix of ambulatory care settings. 
  • Modify an existing PRO data collection app by incorporating FHIR technical specifications and pilot test the modified app in a mix of ambulatory care settings. 

The project revealed several lessons learned: 1) mobile apps are amenable for patients taking surveys, 2) technical assistance or additional staffing is a critical factor to ensure adoption for many practices, 3) no amount of planning can replace testing in the ‘real world’ -- which is critical to successful local implementation, 4) an abstraction layer between the app and the EHR is critical to the success of integrating PRO data into the EHR, and 5) institutional policies impact success.

This project was an important step toward testing the application of FHIR technical specifications in PRO data collection and integration. The findings showed various factors critical to the successful adoption, potential scaling, and sustained use of this technology in ambulatory care settings.

User-Friendly Apps to Advance the Use of Standardized Patient-Reported Outcomes

User-Friendly Apps to Advance the Use of Standardized Patient-Reported Outcomes

Using mobile applications developed with standards allows for smoother integration of PRO data into EHRs and will increase the use of PROs for clinical care, patient self-management, and health services research.

Principal Investigator: Wesley, Deliya, Ratwani, Raj M.
Organization: MedStar Health Research Institute
Research Profile: Advancing the Collection and Use of Patient-Reported Outcomes Through Health Information Technology
Funded Amount: $1,483,876

Getting right to the source: using patient-reported outcomes

Patient-reported outcomes (PROs) provide the critical patient perspective for many aspects of healthcare. Their use facilitates shared decision making between providers and patients in a clinical setting, supports self-management for patients, and informs patient-centered outcomes research within the healthcare field. Despite their importance, PROs are not collected routinely. One promising solution to increasing use of PROs may be via mobile applications (apps) developed with standards, which could allow for smoother integration of that data into electronic health records (EHRs) or other health information technology systems. As the Scientific Director for Health Equity Research at the MedStar Health Research Institute, Dr. Deliya Wesley and her research team wanted to understand how digital solutions can facilitate PROs integration into practice for clinical use and improve outcomes for all patients.

Setting the technical architecture

Dr. Wesley and her team created an efficient technical architecture to seamlessly integrate PRO data into EHRs using Fast Healthcare Interoperability Resources (FHIR) standards. This research supported the development of standards for electronic applications that collect PRO measures across health providers and systems. The researchers modified and pilot tested an existing app to collect and integrate standardized PRO physical function data into different EHRs, using the newly developed FHIR standards. The team also pilot tested an app that allows patients to complete a set of person-centered measures to support monitoring of their physical, mental, and social health to continue patient engagement with providers outside of a clinical setting.

We now have these standards; that means when the apps are collecting [PRO] data, it is all in a standard format, encoded the same way, and can be pushed into different EHRs in real time in the same meaningful way, whether it was app A, app B, or app C.”
-Dr. Wesley

Testing in the real world

Lessons learned in this research include the importance of testing in the "real world" to fully understand local implementation of apps. The research team found that PROs collected through user-friendly and standardized apps can successfully be integrated into different EHRs using interoperable standards. These research findings show that standardized apps, which collect PRO data, can be successfully adopted across healthcare systems, with the ability to improve systemwide comparisons of health outcomes and population health monitoring.