Future directions in ePRO use | ePROs in Clinical Care

Practice Applications

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.

Table 5A: Challenges and Recommendations for Future ePRO work
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.	Identify which governance models are most effective for different settings/systems Evaluate the systemwide ePRO implementation on care quality metrics Evaluate how ePRO implementation supports contractual/quality reporting initiatives
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.	Identify workflow design standards that can support ePRO use across the health system Create guidance for involving patients and care partners in ePRO workflow co-design and implementation Explore how heterogeneity of user goals (diagnosis, severity, treatment plan, cadence of PROs) may impact design of workflows and tools Understand how the capture of data outside of clinical care impacts the workforce with regard to burnout and workload
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.	Expand use cases for how APIs and other tools can bridge gaps in EHR functionality for ePRO implementation Design ePRO reporting tools to encompass implementation monitoring and evaluation needs at the clinic level Design ePRO reporting tools to encompass implementation monitoring and evaluation needs at the health system level
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.	Create training resources for providers and patients to support score and visualization interpretation across clinical use cases Generate real world evidence on how PROMs and PGHD may be used to inform decision-making Consider the use of ePROs in leveraging predictive analytics to support population health, quality improvement, and process improvement
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.	Advance capacity for health systems to involve patient and community members in co-design of ePRO systems Learn from citizen science culture and methodology to recognize innovative ways people leverage PGHD for healthcare

Conclusion

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.