Establish an ePRO governance structure

A governance structure provides formalized oversight to ePRO implementation, including decisions related to selection, technical configuration, and application of ePROs within and across the healthcare system. In addition, governance committees may promote stewardship of IT and data resources, support tracking and evaluation of ePRO use, and facilitate the dissemination of shared knowledge and lessons learned.

Components of ePRO governance

  • Aligns with health system needs
  • Fits within the organizational committee structure
  • Sponsored by organization executives (or leadership)
  • Driven by organization mission
  • Charged with a defined scope of work
  • Includes interdisciplinary membership
Strategy A
Align ePRO governance with existing organizational and leadership structures

The need for ePRO governance emerges once it is determined that interest and need within the organization exist to address system-wide implementation. While no single model exists for ePRO governance, decision-making approaches are most effective when in alignment with the organizational structure for existing committee work and initiatives. When possible, it is advisable to seek executive sponsorship for ePRO governance in order to stay aligned with health system priorities and to work within the context of other existing committees. Further, consider other committees that support patient engagement, IT infrastructure, and clinical operations where overlap may occur.

Strategy B
Identify interdisciplinary governance membership

Membership comprising diverse experience and expertise within the organization is an important attribute for representative and transparent governance. Membership should include individuals with direct experience implementing PROs in clinical care as well as individuals utilizing the data for quality and contractual reporting.

Given the reliance on IT resources, developing a partnership with IT personnel and informaticists within an organization is important to support decisions regarding ePRO development and deployment. When considering membership, identify people who have the ability to move initiatives forward and take action on decisions made by the committee. Table 2B includes a list of roles and perspectives to consider for inclusion in the ePRO governance membership.

Table 2B: Stakeholder representation to consider for ePRO governance
Stakeholder Experience/Perspective Role
Clinical champion Committed to and experience with implementing and using ePRO data in patient care.
  • Supports messaging to others about the importance of ePRO data for patient care.
  • Provides input on how ePRO data integrates into clinical care
  • Supports the creation of policies and procedures to guide system implementation
  • Provides insight on how ePRO data is tracked/monitored over time to assess patient outcomes
Clinical staff Experience implementing and using ePRO data in patient care.
  • Provides input on how ePRO data integrates into the clinical workflow
  • Participates in creation of policies and procedures to guide system implementation  
  • Identifies training needs for staff
  • Identifies resource needs for implementation, including training
  • Provides insight about how ePRO data are tracked/monitored over time to assess processes
EHR architect Experience using IT infrastructure and data architecture to support healthcare delivery and business operations.
  • Provides knowledge on EHR functionality regarding report and store abilities for ePRO data
  • Provides knowledge on how non-EHR based platforms integrate with the EHR (i.e., interoperability)
  • Provides inside knowledge on future developments or upgrades to existing capabilities
EHR analyst Experience pulling data from the EHR and/or other data warehouse(s) for clinical support and quality improvement.
  • Provides knowledge on how data is queried for reporting, including strengths and limitations
  • Informs the development of reporting for ePRO projects
Population health analyst Experience pulling data from the EHR and/or other data warehouse(s) for contractual or payment reporting.
  • Provides insight about and knowledge of policies and expectations for external reporting
  • Articulates required measures and time points needed to support business goals
Operations lead Experience providing high level management/direction-setting of key service lines, operational areas, or health system initiatives.
  • Provides insight to and knowledge of policies and expectations for external reporting
  • Understands workflows within clinic settings as well as competing demands for staff and initiatives
Healthcare informaticist Experience with design, development, adoption, and application of IT-based solutions to support healthcare service delivery, management, and planning.
  • Provides insight on how technology and data analytics can be used to improve patient care plans
  • Applies user-centered design principles to system design and reporting structures that leverage information management
PROMs specialist (e.g., psychometrician, researcher) Experience with the development of PROMs, knowledgeable of measurement properties and principles
  • Supports the assessment/vetting of different measures for clinical care
  • Provides expertise in assessing the strengths and weaknesses of PROMs
  • Supports development of training on PROMs
Strategy C
Define the scope of ePRO governance oversight, including the decision-making capacity

The overarching function of the ePRO governance committee is to provide oversight and training and to ensure continual improvement of the program. Defining the charge of the committee supports success. Steps to achieve this include:

  • establishing a charter for the committee, inclusive of mission and scope of work, to clarify the goals of the governing body  
  • ensuring clarity in the charge of the group, as well as a mechanism for reporting results to health system leadership
  • reviewing committee work and accomplishments regularly (e.g., annually) to inform continued direction

Establishing a value proposition and writing a governance charter can formalize decision-making activities (please see ePROs Governance Sample Charter template in the Tools and Resources section). How the committee functions over time, however, may evolve. In the early stages of ePRO implementation, ePRO governance may serve to conduct a needs assessment to plan for and create policy around PRO implementation.

As work and efforts mature, the ePROs governance may shift toward providing support to teams, offering training to providers and patients to support implementation, identifying opportunities to improve upon current efforts and initiatives, and supporting system-level reporting on ePRO data reflecting metrics of both processes and outcomes.