Organizing ePRO measurement for care delivery

ePROs may support a multitude of patient-care goals, including screening and needs assessment, diagnosis, symptom monitoring, shared decision-making, and outcomes assessment (individual or population-level). The goals for ePRO use will be dependent on each healthcare setting’s context, and there may be multiple goals to consider. Figure 1C outlines three common use cases that characterize the patterns for ePRO use in preventive care, chronic/specialty care, and interventional/surgical care. These use cases provide a framework for the development of an ePRO measure selection strategy and associated governance structures within a health system. (Please refer to ePRO use cases in the Tools and Resources section for more information.)

ePROs that are used in multiple settings across the healthcare system may need additional governance support and standardization to avoid duplication and the creation of an unnecessary burden for patients and care teams. Health systems may be well served by organizing ePROs into categories that reflect how they will be implemented across the system to meet goals for clinical care, specifically:

• Generic measures: These are measures that apply to any patient population, such as assessing quality of life or physical function. A generic ePRO may be implemented system-wide and will have multiple use cases (and therefore dependencies or constraints) for how it is used in clinical practice.
• Condition-specific measures: These measures apply to a specific patient population (i.e., one with a defined clinical condition), such as assessing symptoms for multiple sclerosis or low back pain. A condition-specific ePRO may be implemented in a narrower scope, for example, within a single clinic or department.

Lastly, it is important to note that health systems are increasingly leveraging ePRO data to support broader functions, such as population health, quality improvement, care quality assessments, contractual reporting, and research. The perspectives of patients, health system administrators, and payers are therefore important to understand. While many of these perspectives will be reflected in this toolkit, our primary focus will be how ePROs are used to directly support patient care from the perspective of the health system.

A health system’s selection of ePRO measures will depend on context for use and should continuously be informed by the growing body of evidence for how ePROs inform patient-centered care and care quality. While this guide does not directly recommend any specific ePRO measures, we do note topics for health systems to consider when thinking about their measure selection strategy across the enterprise.

Healthcare settings for ePRO implementation

Healthcare settings range from single-specialty community clinics to large health systems that may include multiple hospitals and affiliated clinics covering a wide breadth of specialties (Burns & Pauly, 2018). In addition, settings vary by whether they are affiliated with an academic institution; are an inpatient or outpatient facility; are an integrated health system; and are a non-profit, for-profit, or government organization. Other characteristics to consider may include the population(s) served, location of the facility (e.g., urban vs. rural), the intended use of ePROs, and whether and where ePRO data is to be contributed outside the healthcare setting (e.g., for quality measures).

It is critical to understand the makeup of the setting for the ePRO implementation because the characteristics of the setting affect how the implementation is conceived and carried out. Across settings, the range of internal resources available for developing an ePRO implementation will vary; once users have identified which resources are available internally, then it can be established how to access additional external resources. People, whether internal or external to a particular setting, are an especially important resource.