Future directions in ePRO use
This guidebook comprises lessons learned from our own efforts to implement ePROs within a large academic health system, lessons gleaned from the literature, and through discussions with others involved in similar initiatives in healthcare systems across the United States. Over the course of this project, the landscape for capturing and utilizing ePRO data has continued to evolve. Notably, the increased interest in capturing ePROs within different clinical settings has spurred discussions for how health systems can better coordinate efforts within and across the organization. We anticipate continued efforts among health systems to leverage technology-driven strategies for patient engagement. As a result, this will remain a fluid space for learning. Experience with ePROs, as well as with other forms of patient-generated health data, will produce new evidence for the advancement of patient-centered care. To support future directions, we highlight areas where practice-based learnings are needed to advance the use of ePROs and patient-centered technologies in clinical care.
|Area||Challenges Facing ePRO Implementations||Future Directions|
|Governance and leadership||ePROs require multiple levels of health system governance. Supporting ePRO implementation through structured initiatives guided by multidisciplinary teams is important, but governance models are not well understood.||
|Workflow and human factors||Expanding the ability to collect data from patients outside of the clinical visit requires redesign of workflows to ensure patient care is safe, efficient, and high quality. Attention to how new workflows contribute to the efficiency of healthcare teams is also important.||
|Technology evolution||A “best of breed” ePRO technology does not exist. Challenges facing interoperability persist, further stifling advancement in ePRO and PGHD capture and use.||
|Data-driven care and data science||Clinicians and patients must know how to apply ePRO data to clinical practice and decision-making. Evidence on how PGHD improves care continues to evolve.||
|Citizen science and engagement||Achieving patient-centered care through ePROs will require meaningful patient engagement. Health systems are not well poised to support patients acting in a partnership role.||
It is expected that the use and expansion of technology to drive improvements in the quality and efficiency of care will persist. This includes advancements in how patient-reported and patient-generated health data are captured and used to advanced collaborative and patient-centered care. Future endeavors will benefit from building a community of practice, inclusive of patients and community members, to advance research and knowledge translation around effective strategies. In this manner, as healthcare transforms, the patient voice will remain central to the journey.