Guidelines

Align ePROs with health system goals

Central to ePRO initiatives is patient care. Yet the data derived for patient care may support other goals for clinical care, quality improvement, and contractual obligations. Finding opportunities to align the use of PROMs for enhancing patient care with overall health system goals (see Figure 2A) supports the efficient use of IT resources while taking into account the various competing drivers and constraints in a health system environment.

Figure 2A: Health system goals for ePROs
Diagram showing goals: Patient-centered care, care quality and delivery, population health and outcomes, improved data and decision-making

At the core, ePROs should support patient care decisions, as well as illuminate other dimensions of care quality. For example, ePRO data for hip pain and function may provide the healthcare team insight on how a patient is progressing following a hip replacement. At the health system level, this same data may be reported to meet the needs of contractual obligations demonstrating performance achieved on patient-centered measures. In this context, the same measure aligns with both patient care and business operations for contractual reporting.

This priority-setting guideline aims to inform the initial stages of developing governance by identifying how to align the use of ePROs with different health system goals (for example, practice transformation or quality improvement). Key to this guideline is the involvement of stakeholders to prioritize the scope of resource and policy needs.

Strategy A
Clarify how ePROs will inform care delivery and align with health system goals

The time patients and their clinicians have together is often constrained and filled with competing priority issues. It will be difficult for clinical teams to adopt ePRO collection if the data is not relevant to the delivery of care for their patient populations or if it is unclear how ePRO scores can lead to direct and actionable benefits for patient care.

ePRO scores may be designed for different purposes (See Table 2A) including conducting a needs assessment, symptom monitoring, supporting shared decision-making, or analyzing population health initiatives. When possible, ePROs should suit a variety of stakeholder needs to economize organizational resources. Prior to navigating specific content needs, understanding common clinical goals of PROMs and the context of PROMs use serves to frame the goals of ePRO governance implementation strategies.

Table 2A: Application of ePRO data in clinical settings
Healthcare Goal Application of ePRO Data
Needs assessment

Detect the presence and frequency of symptoms, functional impairments, and/or health risks
Shared decision-making

Discuss potential outcomes of a treatment or intervention based on an individual’s own experiences and the experiences of similar patients
Symptom monitoring and management

Identify the need for new treatment or changes in treatment
Outcomes assessment

Determine the effectiveness of a treatment or intervention
Quality improvement

Evaluate quality of care among populations, conditions, and health care disciplines
Strategy B
Identify stakeholders’ current and future information needs for ePROs

Work conducted to understand different use cases for ePROs across the healthcare system allows for the identification of relevant ePROs to consider for adoption where cross-cutting use exists.

The initial phase in developing governance objectives and strategies entails identifying various stakeholder goals for ePRO use. The information needed to support these goals drives the selection of ePRO measures (please see Governance Structures guideline) configuration of data collection and reporting workflows (please see the Integration section), and presentation of results to end users (please see the Reporting section).

Needs assessment methods

  • Interviews and focus groups to explore current and future state needs
  • Surveys of information needs and gaps
  • Observation of processes in practice
  • Audit questionnaires already deployed in the EHR
  • Review of protocol and policy documents

Direct engagement with health system stakeholders helps to define intended use of ePROs in clinical practice. A needs assessment seeks to learn about the current environment of PROM use and the desired future state for how data will inform decisions, often collating data from various sources. Consider both the types of methods that can be used to facilitate the needs assessment and the opportunities where more extensive engagement with individual stakeholders can provide insight into the nuances and complexities of using ePROs.

Clinical champions are a valuable resource to identify additional individuals or groups for participation, bringing diversity into the work of understanding end-user informational needs. The feedback gathered from champions and other stakeholders can generate “wish lists” for specific ePROs or domains of information (e.g., depression, physical function, social function) that are important to capture. Feedback can also highlight the hurdles and technical barriers users may experience regarding successful use in practice.

This type of stakeholder input serves to advance an understanding of the settings and context of ePRO tool use, as well as any consequences—intended and unintended (e.g., burden on patients)—that may result from implementation across diverse care settings. In addition, direct engagement of stakeholders can help support buy-in for expanding the use of ePROs.