Guidelines For Meaningful and Effective Electronic Patient-Reported Outcomes Use in Clinical Settings

Difficulties of integrating valuable patient-reported outcomes PROs into care

PROs are data that can yield insights into health status, function, symptom burden, adherence, behavior, and quality of life. Traditionally, PRO data were collected via pen and paper (e.g., answering paper survey questions about physical function), but technological advances have enabled the collection and use of electronic PROs (ePROs) (e.g., completing a web-based survey on physical function and sending the results to your doctor). However, integrating PRO data into existing systems and workflows is difficult. Leveraging ePRO data requires scaling and balancing the needs of individual users with the health system at large.

Community of practice: group think

Dr. Danielle Lavallee saw the need to create guidelines to facilitate meaningful and effective ePRO use in dynamic, real-world clinical settings. She and a University of Washington (UW)-based team convened a community of practice—a group of people with a common concern and interest in generating and sharing knowledge and best practices about it. For this research, the community of practice included stakeholders both local (individuals in the UW Medicine health system who have a breadth of experiences related to ePRO use, health IT, workflow, and health system leadership) and national (individuals part of professional groups associated with PRO measurement and practice, medical informatics, and health services research).

“How do we use patient-reported outcome measures to advance care and help people make the best decisions about their health in partnership with their healthcare team? From both a research and a practice standpoint, what I saw was that we had measures that were getting integrated in different ways but there wasn’t a common approach [to doing so]. From a system standpoint, it really becomes hard to navigate capturing similar types of information in different types of ways.”
- Dr. Danielle Lavallee

Disseminating these guidelines for all to use

Over 4 years, the community of practice analyzed peer-reviewed literature on ePRO use, talked with clinical providers, cataloged local ePRO use cases, and monitored ePRO implementation within UW’s own EHR system. The group identified 24 guidelines across three thematic areas: governance, integration, and reporting. The guidelines highlight strategies to balance health system goals and resources, how to implement ePROs in clinical care, and how to translate ePRO data into actions that support healthcare transformation. Health systems can use the guidelines regardless of the specific technology platform or PRO measurement approach, which enables them to be adapted to particular context. The final guidelines and supporting tools and resources are available as a public web-based toolkit (epros.becertain.org).