Design workflows for easy data capture

In order to maximize the impact of ePRO data and the objectives for how ePRO data should direct care, ePRO workflows should be designed with two primary goals in mind:

  • complete ePRO data collection for all appropriate patients, and
  • intentional review of ePRO data by clinical teams

Accomplishing this will depend on an in-depth understanding of clinical workflow and planning for potential implementation needs in real world contexts of care.

To this end, partnership between clinical teams and IT personnel supporting the technical build is critical. This helps ensure that the technical functionality of ePRO tools aligns with clinical workflows. Without this partnership, the integration of ePROs into clinical practice might falter. This guideline builds on the Clarify Data Use guideline by supporting the technical integration once it is understood how ePRO data will inform care.

Strategy A
Describe how core ePRO workflow activities will intersect with existing clinical workflow

In the Overview for this section, we introduced the concept of SADT modeling, which is an approach to characterize common or core activities that consistently occur across multiple, diverse workflow environments. For ePRO, there are five core activities that should occur in every workflow:

  • deploy (delivering the ePRO questionnaire to the patient)
  • collect (the patient’s completion of the ePRO questionnaire)
  • track (how clinical staff monitor the completion status of ePRO questionnaires)
  • review (how clinical teams access and view ePRO scores)
  • document (how ePRO scores are archived for future use or use by other stakeholders)

Each of these core ePRO activities may involve several sub-steps or micro workflows. For example, if we further expand the collect activity, it might include steps such as:

  • patient receives notification of ePRO questionnaire to complete
  • patient logs into patient portal, and
  • patient completes questionnaire

While the workflow activities for collect and review may seem like the most relevant activities to consider, the activities of deploy, track, and document can often address the most critical linchpins for successful ePRO integration into clinical care.

Figure 3D outlines each ePRO core workflow activity. Of note, each step in the process should have a signal or output that triggers future steps in the workflow. For example, when a patient finishes the ePRO questionnaire (collect), this should produce a signal that aids the workflow for tracking ePRO responses (e.g., an automated alert to the clinical team).

Figure 3D: Template for core activities in ePRO workflow
Graphic showing example of ePRO workflow, starting with Deploy, then Collect, Track, Review, and Document

Approaches to Consider

  • Document existing workflows
  • Identify updates to procedures necessary for ePRO integration along with resources needed
  • Define protocols for how ePRO data will be communicated to appropriate care team members
  • Identify impact of workflow on ancillary teams (e.g., scheduling, call centers, contact systems etc.)
  • Engage with stakeholders (IT, clinic staff) to collect feedback and iterate as necessary

Utilizing the workflow diagram above as a template will help ensure that critical elements of ePRO workflows are considered and addressed. Once your ePRO workflow design is established, it is important to place that workflow within the context of existing care delivery processes. Each of the five core activities may need to be modified to better align with existing workflows, such as those for appointment forecasting, appointment check-in, or the clinical visit itself.

Much like any other implementation of new practices, we recommend engaging with clinical teams to understand their current state and to co-design workflow steps to achieve optimal workflow goals with minimal disruption to patient care.

Strategy B
Assess and plan for potential barriers to ePRO use in clinical care

Workflow design often emphasizes the ideal state or best-case scenario. However, in order to ensure that data from patients is delivered to the healthcare team and is reviewed with the patient as needed, it is important to consider the ways that workflows might deviate or fail when put in the real world environment. Moreover, in busy healthcare settings, many challenging scenarios might arise that impact ePRO workflow. 

Proactive work to identify possible workflow gaps and constraints during the design phase can help teams anticipate and manage barriers to ePRO use. This can minimize workflow disruptions, missing data, and missed ePRO reviews. Table 3B gives some examples of issues that may affect the different core activities of ePRO integration.

Table 3B: ePRO workflow considerations and constraints
ePRO Core Activity Possible Workflow Gaps or Constraints
Deploy ePRO
  • Clinical team member does not recognize ePRO is due
  • Clinical team member does not send ePRO measure to patient
  • ePRO measure is ordered, but another team member needs to authorize or finalize order to deploy
ePRO data collected
  • Patient does not have access to portal or electronic tools where ePRO measure is located
  • Patient does not receive notification at all, or in time to complete ePRO prior to appointment
  • Patient cannot find ePRO measure within the portal or tool
  • Patient cannot, or does not, finalize and submit ePRO response
ePRO response tracked
  • ePRO completion status is not flagged in clinical team views
  • ePRO results do not go to appropriate team member
  • ePRO response status cannot be seen until day of appointment
  • Clinical team cannot, or does not, remind patient to complete ePRO
  • ePRO results do not refresh in real time to support tracking
  • Staff does not update appointment documentation with forecasted ePRO needs
  • Multiple ePRO measures are sent, and staff cannot determine which ones are completed or still due
  • Clinical staff cannot, or do not, confirm ePRO measure completion at the time of appointment check-in
ePRO score reviewed and documented
  • ePRO results are not available electronically in real time
  • ePRO has missing data and cannot calculate total score
  • PROM results are captured on paper but are not entered into EHR as discrete values for future follow-up
  • Provider is not aware that new ePRO results are available
  • Provider does not know how to locate ePRO reporting tools
  • ePRO reporting tools do not contain relevant clinical data
  • Provider is unsure of score interpretation and appropriate clinical response
  • ePRO responses are not validated or saved into the patient’s record
Strategy C
Evaluate the need for multiple data-capture modalities

To promote widespread use of ePRO data, it is critical to ensure that ePRO tools are easy for patients to complete and for clinicians to review. However, we recognize that due to a variety of factors such as resource availability (e.g., tablet computers available in a waiting room), healthcare setting characteristics and infrastructure (e.g., space constraints), patient characteristics (e.g. access to computers, language needs), or technological capabilities (e.g., access to patient portal), multiple data capture modalities may be warranted.

Designing workflows that incorporate multiple modalities is critical to ensure widespread use of PROMs. Yet, multiple modalities will also introduce more complexity, as there will be multiple pathways that can facilitate the same workflow task. It may take more IT and staff investment to accommodate and support the variety of modalities. Table 3C highlights some of the advantages and considerations for different ePRO data collection modalities.  Each ePRO implementation may use a combination of modalities, depending on the characteristics of their setting and resources available. We recommend designating “primary” versus “secondary” modalities to support streamlined workflows for clinical staff.

Table 3C: Modality considerations for ePRO data collection
Modality Advantages for ePRO Data Collection Considerations for ePRO Data Collection
Electronic (computer, kiosk, web-based portal)
  • Electronic data collection facilitates optimal data storage (discrete variables, development of datasets and registries)
  • Electronic data collection facilitates real time scoring and allows for greater reporting capabilities
  • Electronic data collection requires all users to have access to technology (computer, internet) at home or in clinic
  • Electronic data collection may require more tracking effort on behalf of clinical teams
Mobile (app, tablet, smartphone)
  • Electronic data collection facilitates optimal data storage and reporting capabilities
  • Mobile data collection may be most aligned with some users’ preferences
  • Mobile data collection requires users to have access to specific technology (smartphone or tablet), which may never be universal
  • Mobile data collection may require extra steps (i.e., downloading app) and additional work to ensure patients are set up to use
  • Mobile data collection may have formatting limitations for the display of certain PROs
  • Paper may be considered more customary or comfortable for users
  • Paper completion (particularly in the healthcare setting) may be easiest to monitor/ track
  • Paper may be necessary in the event that electronic systems are unavailable and may be a necessary backup
  • Paper data collection can prohibit electronic data storage (i.e., if documents are only scanned versus actual data entry)
  • Paper data collection prohibits electronic scoring and reporting, unless transcribed by staff
  • Transcription errors and burden should be considered if staff data entry is used
In-person facilitation
  • In-person facilitation promotes data completeness
  • In-person facilitation may influence patient responses or freedom to share perspectives
  • In-person facilitation is very resource intensive and impacts clinic flow and overall clinic visit time