Project Summary

Background: Centers for Medicare and Medicaid Services (CMS) and other stakeholders have called for patient and family engagement in initiatives to improve US healthcare quality. The inclusion of quality measures in value-based programs has heightened the importance of involving patients and families in the process of measure development to ensure programs reflect true “value.” However, quality measurement is often an invisible process for the public, and learning when and how to participate in the development process may be daunting.

Proposed Solution to the Problem: The 2020 Patient Family Advisor (PFA) Summit on Measure Development, to be held at the National Quality Forum (NQF) in Washington, DC, will focus on opportunities to improve patient and family engagement in measure development. PFCC Partners and subcontractor Discern Health will develop content to inform tools to raise public awareness around quality measures and promote effective patient engagement in all phases of the measurement lifecycle.

Objectives: The summit will allow patients, families, and measure developers to work together to explore the challenges and opportunities for partnering on measurement. Key takeaways will be synthesized into output materials and disseminated through the PFAnetwork, organizational participants, measure developers, and additional venues identified during the planning process and summit.

Activities: The project team will convene a planning committee drawn from the PFAnetwork workgroups and measure development experts to advise on the meeting content and approach. The team will develop materials including premeeting instructions and pre-reads, an agenda, a presentation deck, an onsite discussion guide, and devices to facilitate discussion. The team will host an orientation webinar, and patient and family participants will have the opportunity to participate in a virtual training, Measurement Basics. During the meeting, the team will use an interactive agenda and human-centered design techniques to elicit discussion and insight on key meeting topics. The team will facilitate the learning and produce public-facing materials to capture summit insights.

Outcomes and Outputs (projected): Outputs will include a thematic summary and public-facing education materials, potentially including an issue brief, podcasts, and press releases. Materials could be used by a broad array of stakeholders to help inform patients and families about quality measurement and development opportunities and improve their ability to engage meaningfully in the process.

Patient and Stakeholder Engagement Plan: To identify patients and families for participation, the team will leverage Patient Family Centered Care (PFCC) Partner's PFAnetwork of over 600 patient and family advisors. The team will develop an application to select a diverse group of network participants, offer a stipend, and cover travel expenses. The team will conduct targeted outreach to identify additional stakeholders including measure developers, quality organizations, policy makers, and patient advocates. The team will prepare stakeholders to participate with the materials described above.

Project Collaborators: Discern Health will serve as a subcontractor for this project, co-leading the planning and execution of all summit activities. Discern Health will leverage its experience in quality measurement, stakeholder convening, and publishing healthcare insights to help ensure a high-quality event with meaningful output. National Quality Forum will provide the venue and food and beverage for the convening. NQF is a long-standing partner of PFCCpartners and is committed to learning how to effectively engage patient and family caregiver insights in all aspects of measurement development.

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Project Information

Libby Hoy
Patient Family Centered Care (PFCC) Partners

Key Dates

12 months


Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: November 30, 2022