Beyond a Seat at the Table: Building the Infrastructure for True Patient and Family Partnership

Darcel Jackson, Manager, Patient and Family Centered Care 
Paige Warner, PFA Engagement Specialist 

Children’s National Hospital  

For years, patient and family engagement in healthcare has been framed as offering “a seat at the table.” While well-intended, that language often limits partnership to presence rather than influence. Our experience taught us that families don’t need a chair, they need a structure. 

What emerged was not a single council or committee, but a Patient and Family Advisory Council (PFAC) Collaborative that became the blueprint for system-wide engagement. 

The Context: When Engagement Is Fragmented 

Like many organizations, we began with multiple PFACs, unit-based, condition-specific, and program-focused councils doing meaningful but often siloed work. Each brought deep lived experience and commitment, yet staff often struggled to know which council to engage and when. Advisors were asked to stretch beyond their scope, while similar questions surfaced repeatedly across the system. 

The challenge was not willingness or intent. It was coordination. 

Without shared infrastructure, engagement risks becoming episodic or surface-level, rather than embedded into how care is designed, evaluated, and improved. 

What Works: From Councils to a Collaborative 

Rather than consolidating or centralizing voices, we focused on coordination. 

The PFAC Collaborative was intentionally designed to bring councils together, creating space to align shared priorities while preserving the unique expertise of each group. Through the Collaborative, advisors from multiple councils can partner on committees, improvement initiatives, and projects, allowing teams to engage family partners with a broader range of lived experiences. 

This model also provides a clear and consistent pathway for staff seeking advisor input. Instead of relying on a single council or perspective, teams can partner with advisors across councils, strengthening representation, expanding insight, and increasing the diversity of experiences informing decisions and improvement efforts. At the same time, the Collaborative helps build a shared culture among staff, where partnering with patient and family advisors is expected, supported, and part of everyday work. This shift reframed the core question from “Do we have patient and family representation?” to “Where and how are patients and families shaping decisions?”—an approach grounded in the core principles of patient- and family-centered care.1 

This approach also reflects a growing body of evidence on patient and family engagement that positions partnership not as a program, but as a core component of quality, safety, and system performance.2 

Building Capacity: Infrastructure That Supports People 

A critical, and often overlooked, function of the PFAC Collaborative is its role in building capacity. Through shared infrastructure, we are able to support and prepare both advisors and staff. 

Advisors receive onboarding, ongoing education, and clarity around roles and expectations. Staff receive guidance on how to meaningfully incorporate advisors as equal stakeholders, moving beyond consultation toward true partnership. Engagement without preparation can unintentionally place burden on families and frustration on staff. Infrastructure helps prevent that. 

Making Engagement Visible and Sustainable 

The PFAC Collaborative also creates shared visibility, helping sustain engagement as a cultural practice, not a series of isolated interactions. Through regular communication across councils, advisors and staff can see how family partnership is showing up throughout the institution, where collaboration is growing, and how individual contributions connect to larger system efforts. 

These spaces highlight PFCC in action, recognize advisor contributions, and reflect the collective impact of a growing network of councils. Making engagement visible reinforces shared purpose, strengthens connection across councils, and supports the ongoing cultural shift required to sustain meaningful partnership over time. 

A View from the Field 

One of the most meaningful changes has been cultural. Teams stopped asking families to respond to decisions already made and instead invited them upstream, during design, planning, and prioritization. Advisors were no longer viewed as a checkbox for inclusion, but as partners whose insights helped challenge assumptions, humanize data, and strengthen solutions, often before decisions were finalized. 

Over time, the PFAC Collaborative stopped being “the place where family voice lives” and instead became part of how teams understand the human experience across healthcare.3 
 

References 

1 Institute for Patient- and Family-Centered Care: https://www.ipfcc.org/about/pfcc.html 

2 Health Affairs: https://www.healthaffairs.org/doi/10.1377/hlthaff.2012.1133 

3 The Beryl Institute Experience Framework: https://www.theberylinstitute.org/page/ExperienceFramework