Identify governance activities that guide practice

Governance activities can be established that formalize procedures for planning and conducting ePRO implementation. These mechanisms can be in the form of documented policies, procedures, or templates that set the rules and expectations agreed upon by the governing body. If a formal governance body is established (please see Governance Structures guideline), the group can develop specific practices and requirements to facilitate the management and sustainability of ePRO implementation.

Good governance requires that processes and decision-making are transparent. Generating system-level guidance helps supports necessary standardization, reduce variability, and streamline reproducible processes. These governance activities will inform individual site implementations addressed in the Integration section.

Strategy A
Clarify expectations about the selection of relevant, evidence-based PROMs

A fundamental component of any ePRO implementation is the selection of relevant, evidence-based PROMs that support clinical goals for patient care (please see the Goal Alignment guideline). Governance can ensure adherence to this principle by providing guidance on measurement selection to end-users as well as creating a repository of endorsed ePROs available.

There are several considerations when selecting one or more PROMs for use in clinical practice, with well-known guidance available (see ISOQOL User’s Guide in the Tools and Resources section). This includes, but is not limited to, the following:

  • type of PROM to use (i.e., generic versus condition-specific measure, also clinical domain)
  • psychometric properties (i.e., validity and reliability)
  • available evidence of the specific PROM use in practice
  • pragmatic issues related to administration (e.g., time for completion, resources for administration)

Practice Consideration

When possible establish common or core domains of PROM instruments available as enterprise resources. Organize the core domains into a catalog of recommended ePROs.

In the traditional research context, the selection of which PROMs to use is driven by theoretical frameworks that explain the relationships between measurable constructs within a specific clinical domain and the health phenomenon of interest. For health systems, the use of ePROs across settings and stakeholders may drive the adoption of common (or core) domains with a multitude of potential uses, rather than discrete uses within specific clinical domains.

Aggregating ePROs by core measurement domains (e.g., health-related quality of life, function, depression, pain, or substance use) allows for the identification of common areas of interest across diverse healthcare settings, for which enterprise resources would be beneficial.

Strategy B
Create a process for managing the intake and prioritization of ePRO implementation requests

Health systems should ensure there are adequate mechanisms to evaluate and prioritize ePRO IT projects. Health systems can assess their current process for IT project intake and prioritization (which we refer to as the project-intake phase) and consider adaptations to account for the nuances of ePRO measurement and design.

For example, some types of ePROs may require more support for testing and training than other IT projects. Project requests that lack clear clinical champions or established workflows are likely to be less successful (please see the Integration section). Additionally, evaluation at the IT project-intake stage can serve as a governance requirement to ensure that only ePRO implementations that strongly align with health system goals are approved or prioritized. One opportunity to standardize the process is to develop an ePRO project-intake form (please see ePRO project intake checklist in the Tools and Resources Section).

Strategy C
Define key measures for success to support ePRO implementation and evaluation

The planning phase for any project is the rigorous period when project scope and tasks are outlined. Governance can provide expectations for the scope and approach to project management by introducing dimensions for evaluation.

Defining key evaluation metrics provides a framework for how to plan and execute ePRO integration in local settings (please see the Integration section). This also allows for consistent metrics across implementations and pilots for collective learning via the governing body. Clearly defined criteria for reporting project status (see Table 2C) can serve to escalate risks and issues to the levels required by the organization.

Table 2C: Evaluation components of ePRO implementation to consider for ePRO governance
Design/Integration Component Possible Measures of Success
  • % of eligible patients who receive ePRO notification
  • % of eligible patients who submit ePRO notification
  • Usage rates for different ePRO modalities
  • Average check-in and/or waiting room time
  • % of missed ePROs (not complete by time of clinical visit with provider)
  • Time spent preparing ePRO data for contractual reporting
  • % of missing data (i.e., incomplete ePROs responses)
  • % of ePROs reflected appropriately in clinical documentation and decisions
IT resource utilization
  • ePRO build project completion status (on time, on resource)
  • % of standard vs. custom builds or use of available functionality
  • Level of onsite support needed
  • Number of post-build change requests