Clarify how data will be accessed and support care

The first step to implementing ePROs is understanding how stakeholders will use data for clinical decisions and care delivery. This important first step of understanding how ePRO data will be accessed and used highlights key design, workflow, reporting, and/or resource needs that must accompany ePRO tools in order to make them actionable. The selection of PROMs will likely be an iterative process that involves identifying the PROMs that best align with goals, testing the use of ePROs in practice, and ongoing evaluation of impacts on care delivery (van der Wees et al, 2019). In this guideline, we focus on three strategies that seek to clarify a) how ePROs should inform patient care, b) what resources clinical teams might need to respond to ePRO data, and c) how ePRO data will be used more broadly for health system delivery.

Strategy A
Clarify how PROMs will inform patient care

Integrating ePRO data with clinical data can enhance clinical decision-making and patient-centered care. In the Goal Alignment guideline in the Governance section, we focus on aligning ePROs with health system and stakeholder goals to determine the measurement strategy. In this guideline, our focus is on ensuring that clinical teams establish clear use cases for how ePRO data is used at the point of care.

Figure 3C provides an example of how a single data point, in this case a measure of depression symptoms (Patient Health Questionnaire), might be used to support clinical decisions in different contexts of care. Even though each scenario uses the same ePRO, the clinical purpose, reporting focus, and patterns of data collection vary significantly. At the beginning of any ePRO initiative, project teams should begin by defining the use case for clinical decision-making (e.g., preventive, chronic, interventional) and by clarifying the ePRO score thresholds (or, if appropriate, minimal clinically important difference, MCID) for clinical action or follow-up.

Practice Consideration

It is important to remember that ePROs may not benefit every patient or context of care. There may be situations where ePROs are not reliable or actionable, cause undue stress or anxiety for patients, or are not appropriate for certain types of clinical encounters.

While ePROs often provide a net benefit for patients, care teams and health systems, project teams may need to provide training on how to manage exceptions.

Of note, not all uses of PROMs will be accompanied by pre-defined thresholds for clinical action; however, it is valuable for project teams to establish guidance for how care teams should apply PROMs to care delivery and when possible, aligning with existing care pathways or clinical protocols. By starting with the ultimate goal of determining how PROMs should inform patient care, project teams can better understand the needs for ePRO workflow and reporting.

Figure 3C: Example ePRO clinical use cases across different contexts of care (Austin et al, 2019)
Figure showing examples of ePRO clinical use cases, such as preventive care, chronic/specialty care, and interventional/surgical care
Strategy B
Identify resources needed to support clinical teams in responding to ePROs in practice

Determining the resources needed to support the clinical team for its specific use case for ePROs can help clarify the project scope and resources required for project implementation.

For example, consider the use case in Figure 3C of the PHQ-2 for preventive care. In Strategy A above, the project team may have identified that a PHQ-2 score of 3 or higher is considered abnormal.

Resources needed might include:

  • Training
  • Decision support resources
  • Staffing
  • Budget
  • Technical, e.g., tablets/kiosks
  • Physical, e.g., space

Next, the project team should identify what the appropriate response should be from the clinical team, such as conducting a follow-up assessment during a clinical visit or referring the patient to a behavioral health specialist. In many cases, ensuring that clinical teams are able to appropriately respond to ePRO data requires additional resources, such as training, clinical decision-support tools, patient education supports, or additional staff time. Performing this step during the implementation planning phase can help with identifying the true scope of the project.

It is also important to consider that ePRO data may cover a variety of clinical and social domains (e.g., quality of life, functional status, symptom severity, emotional health, or financial distress). As a result, responding to ePRO data may require the expertise of multiple team members, including clinical providers (primary and specialty), nursing staff, social workers, and administrative support staff. The workflow for ePRO response may therefore involve several layers of collaborative team review and decision-making.

Strategy C
Understand health system needs for ePRO data beyond point-of-care decision-making

The first two recommended strategies have focused on how ePROs will inform clinical decision-making at the point of care. However, with any clinical implementation, there may be additional needs for ePRO data within the health system, including for population health, quality improvement, and billing.

For example, the capture of ePRO data including pain and function within an orthopedic practice may also support reporting for national quality initiatives. In order to ensure that ePRO tools are designed to meet the needs of all stakeholders, it is important for the full project team, in particular, the IT professionals responsible for the design of ePRO data storage architecture, to understand all of the goals for ePRO data use. Working with clinic leadership to identify broader needs for PRO data can support this strategy (see Governance section).

Table 3A below provides a few examples of considerations for ePRO use beyond the point of care.

Table 3A: ePRO use beyond the point of care
ePRO Use Sample Use Case Potential Consideration
Billing & contractual reporting ePROs provide documentation that allows for billing of a particular care visit type
  • The need for ePRO scores to be reflected in visit documentation (e.g., progress note)
  • The need for ePRO completion status to align with the appointment date used for billing
Quality improvement ePROs are used as part of a care pathway to standardize processes for depression medication changes
  • The need to align ePRO tools with existing order sets or tools for care delivery
  • The need for reporting tools that allow care teams to monitor compliance with care pathways
Population health ePROs are delivered through the patient portal to meet screening requirements for patients who do not have an upcoming appointment
  • The need for bulk distribution of ePROs to tailored patient lists
  • The need for a single documentation point of screening completion status within the record