Guidelines

Engage users in ePRO adoption and use

The use of ePROs in clinical practice may be new to both patients and care teams and is distinctive from other types of data they may be used to (i.e., past medical history). User engagement is critical to facilitate adoption and eventual use of ePROs. Effective and sustainable implementation of ePROs requires active participation by patients and all members of the care team.

The Governance section highlighted the drivers and implications of stakeholder engagement in the design of ePRO tools. In the Goal Alignment guideline, we focus on evaluating the information needs of stakeholders for ePRO collection and use. Here, we will focus particularly on training, education, and engagement of users for ePRO data collection and review.

Strategy A
Identify strategies to actively engage patients in ePRO use

Engaging patients in ePRO use should start early in the implementation planning and design phases. Patients will need to understand the value of ePROs for their care in order to engage in ePRO collection and use.

Consider the patient’s own workflow (see Table 3E) to target junctures of engagement that are critical to the success of collecting and using ePROs in practice. When designing engagement strategies, it is important to consider that local clinics often have their own approaches for facilitating care processes (e.g., how to make an appointment, how to contact the clinical team, financial mechanisms, non-office hour procedures). Obtaining input on existing engagement activities from clinics and patients is critical. Involving patients, either from the clinical settings you are implementing in or from Patient & Family Advisory Councils, in the design and implementation of patient engagement strategies can greatly augment patient adoption of ePRO tools.

Table 3E: Example ePRO engagement strategies for patients
Core Activity Patient Experience Sample Engagement Strategy
Deploy Patient receives email notification Tailor notification message to help patients understand context for ePRO measure
Collect Patient completes ePRO questionnaire Provide multiple formats for completing ePRO questionnaire
Track Patient prepares for visit Acknowledge patient for completing ePRO ahead of time
Review Patient and provider review ePRO score Show ePRO scores to patient during visit
Document Patient accesses documentation of clinical visit Give patients access to their past ePRO scores

Practice Consideration

Patients will have different accessibility needs, including the potential need for literacy, audio, or visual supports, or language translation. Project teams should be proactive in identifying the resources available to support patients in ePRO completion, and integrating those recommendations into policies and procedures that support staff and other implementation team members. Project teams should also consider the appropriate role of caregivers (including parents or guardians) to assisting patients in ePRO measure completion, and recognize that policies for caregiver / guardian support may vary based on different PROM clinical domains (e.g., general health vs. behavioral health) (Web Content Accessibility Guidelines (WCAG); Section 508 Standards).

Strategy B
Consider the multidimensional needs for ePRO training

Clinical team members of all roles need training in order to implement ePRO workflow steps and integrate ePRO data into care delivery. Training is often underappreciated and overlooked for various health IT systems, including ePROs, which may be deceptively labeled as intuitive. Excellent training for ePROs is not only about the transfer of necessary information for using the ePRO technology, but also about the mastery of interpreting ePRO reports and using the reports in the patient/provider communication process (especially in the context of shared decision-making).

Sample Learning Objectives for ePRO Training

At the end of ePRO training, clinical teams should be able to:

  • Describe the value of ePROs for care delivery
  • Define the context for ePRO use (e.g. which patients, what timepoints, what settings of care)
  • Specify goals for successful ePRO use
  • Understand how to use ePRO functionality (deploy, collect, track, review, document)
  • Understand how to integrate ePROs into decision-making and/or the clinical encounter
  • Identify resources to navigate barriers to ePRO use in real world practice
  • Adapt current practice to accommodate ePRO integration

It is important that training for clinical teams reflects each of the five core workflow activities (deploy, collect, track, review, document). Training should also consider multiple dimensions of knowledge needed by care team members, including the context and value of ePROs, ePRO project goals, technical knowledge (i.e., how to use ePRO functionality), and needed adaptations to current practice to accommodate ePRO integration.

Project teams should utilize training strategies that best address the needs of different clinical team member roles and are considerate of their availability to engage in training, which may be limited. This may include both informal (e.g., mentoring) and formal training (e.g., training video(s), job aid, lunch and learn). Project teams should also invest in evaluating training effectiveness, for example by assessing team members’ satisfaction with training, understanding of content, and performance resulting from training.

Of note, not all providers may have experience using ePRO data in practice, and the introduction of this new data source may raise provider concerns around the timeliness and appropriateness of their response to ePRO data. Provider engagement in ePRO data use should be a key component of the project team’s training strategy. Project teams may want to pair provider training on ePRO use with additional training to support collaborative or shared decision-making, as well as training that embeds ePRO use within the broader context of care delivery (for example, aligning ePROs with an existing care pathway).