Person and Family Engagement

There are multiple ways to obtain information from individuals early in a quality project, including having informal conversations with individuals, conducting focus groups, and adding persons or their caregivers to the technical expert panel (TEP).

The measure developer, or others desiring interested party engagement, must keep the person’s/caregiver’s point of view central throughout the Measure Lifecycle or quality project and provide opportunities for person input during the information gathering process. Involving persons and family representatives in the measure development process and other quality topics (e.g., on TEPs, in focus groups, during testing) is among the many ways to accomplish the goal of strengthening person and family engagement (PFE). PFE in the measure development process or with other quality projects is the process of involving persons and/or family representatives in a meaningful way throughout the Measure Lifecycle or quality project. Learn more by reviewing the PFE Toolkit. 

Prior to measure or quality topic conceptualization, the measure developer and others desiring interested party engagement should compile a comprehensive plan outlining how they will incorporate person and/or family representative input at each stage of the Measure Lifecycle or quality project. Regardless of the engagement methods used, the measure developer and others desiring interested party engagement provide all individuals involved with measure development and quality topic efforts with clear expectations about what their participation will entail. The measure developer and others desiring interested party engagement may also consider the principles in the Patient-Centered Outcomes Research Institute (PCORI) Engagement Rubric and the Patient Engagement in Quality Measurement Rubric from the Pharmacy Quality Alliance when engaging persons and observe best practices for conducting qualitative research, survey and interview construction, and testing, as applicable. See the Person and Family Engagement supplemental material for more information.

PCORI's Concepts Applicable to PFE

Concepts highlighted by PCORI applicable to person/family member engagement in the measure development process include

• Reciprocal Relationships: Define roles and decision-making authority of all involved collaboratively and clearly.
• Co-Learning: It is important to ensure participants understand the measure development process, PFE, and person-centeredness.
• Partnership: Value the time and contributions of person partners. Time commitment and attendance requests for persons need to be thoughtful and reasonable. The research team is committed to diversity and demonstrates cultural competency, including disability accommodations, as appropriate.
• Trust, Transparency, Honesty: Encourage measure developers to express commitment to open and honest communication with person stakeholders, in a meaningful and usable way, and ensure to make major decisions inclusively.

Technical Expert Panels (TEPs)

TEPs are one of the most commonly used interested party engagement methods. TEPs are composed of representatives with diverse voices from multiple interested party groups, including marginalized communities, to obtain balanced input representing varied perspectives. The measure developer and others desiring interested party engagement should include persons and family member representatives on their TEP because these individuals provide a vital perspective on what is important and useful to measure and evaluate.

Refer to the Technical Expert Panels supplemental material for step-by-step instructions on how to establish and conduct TEPs. Several templates are available to assist with the management and documentation of TEPs.

Public Comments

The public comment process is an essential way for the measure developer and others desiring interested party engagement to ensure their measure development or quality project is using a transparent process with balanced input from relevant interested parties. Public comment periods provide an opportunity for the widest array of interested parties to provide input on the measures under development and maintenance, quality projects, and critical suggestions not previously considered by the measure developer, the TEP, CMS, or others soliciting public comment. Defined public comment periods are consistent with process improvement principles, such as Lean, because they enable early identification of potential issues. CMS recommends a public comment period for each stage of the Measure Lifecycle with most quality projects because addressing issues raised in public comments can prevent errors and early input can reduce rework in later stages. Once resolution of the issues occurs, the measures will perform better when proposed for use and implemented in specific programs or the quality project more meaningful to the interested parties.

There is flexibility to determine the best time to obtain comments during measure development and maintenance or quality project, depending on the needs of the measure developer or those desiring interested party engagement, relative to the specific measure, program, or quality topic. An example of the timing of a request for public comment is before submitting a fully specified measure for consideration on the Measures Under Consideration List and CMS consensus-based entity (CBE) endorsement consideration. Public comments obtained during measure development (and maintenance) are separate from—and complementary to—the public comments obtained during the CMS CBE endorsement process. 

Several templates (e.g. Public Comment Call Web Posting) are available to assist in creating the Call for Public Comment and documenting results.

Other Types of Engagement

Measure developers and others desiring interested party engagement can also engage interested parties through other methods. For example, measure developers may interview subject matter experts, convene focus groups and/or working groups, and present other opportunities for people to weigh in on measure concepts outside of the more formal TEP and public comment periods.

Example 

The Measure Collaboration Workspace (MC Workspace) has an eCQM Concepts module permiting anyone with an Electronic Clinical Quality Improvement (eCQI) Resource Center account to suggest a concept for an electronic clinical quality measure (eCQM). Interested parties have the option to submit an eCQM concept for feedback from other interested parties and, ultimately, to CMS for review, which is outside of the pre-rulemaking process. While the MC Workspace is likely to attract health care and health information technology professionals, anyone with an interest in eCQI can get an account.

See the Other Types of Involvement page for more information.