Experience Framework Lens: Infrastructure and Governance

Experience Framework Lens: Infrastructure and Governance

Effective experience efforts require both the right structures and processes by which to operate and communicate and the formal guidance in place to ensure sustained strategic focus.

The Why: Patients should be involved in healthcare governance because their lived experiences and perspectives help create a more patient-centered system.

P/F Impact Statement: Creating policies, processes, and procedures that are patient- and care partner-centered means consulting, co-designing, and collaborating with them to understand their lived expertise, priorities, and values and translating that into operations that reflect their needs and goals.

Commentary:

Infrastructure and governance are seen primarily as the “behind the scenes” workings of an organization and, as such, are far removed from the daily experience of patients and care partners. However, on a fundamental level, they touch nearly all the pieces of the system that a patient experiences as they move through and receive care. They set the foundation through which a patient experiences healthcare and can either shape the experience as “positive” or “challenging.” A system with wholistic policies, procedures, and processes that reflects the lived experiences and values of patients and care partners will be one that both functions well and creates a positive patient and care partner experience.

Here are some key reasons to consult, co-design, and collaborate with patients and care partners to create a high-functioning, patient-centered healthcare infrastructure:

1. Improves Care Quality & Safety

Patients offer firsthand insights into care experiences, helping identify gaps and improve patient safety.
Their feedback ensures policies prioritize real-world patient needs.
2. Enhances Trust & Transparency

Involving patients fosters openness and accountability in decision-making.
It strengthens trust between healthcare institutions and the communities they serve.
3. Leads to More Effective Policies

Policies and initiatives informed by patient voices are more likely to be relevant and impactful.
Patients help ensure healthcare systems address the needs of diverse populations.
4. Encourages Shared Decision-Making

Empowering patients in governance reinforces a culture where individuals are active participants in their own care.
It shifts the focus from provider-driven to patient-centered care models.
5. Promotes Equity & Inclusivity

Patient involvement ensures that underrepresented groups have a voice in shaping healthcare policies.
It helps address disparities by integrating diverse perspectives into governance.
6. Drives Innovation & System Improvement

Patients bring fresh perspectives that can inspire new approaches to healthcare delivery.
Their lived experiences can highlight inefficiencies and areas for innovation.

The Beryl Institute’s Experience Framework provide many ways in which you can elevate the patient and care partner voice in infrastructure and governance work in your healthcare organization. To reiterate, some of these ways include:

Embedding patients and care partners in quality, safety and accreditation committees and boards
Partnering with them in research, education, and training
Including patients in families in recruitment and hiring, particularly for leadership positions across your organization
Co-designing policies with patients and care-partners
Consulting and collaborating with them in the strategic planning process
Most importantly, for this work to be successful, your organization must have a culture that truly and authentically values lived experience and lived expertise and creates a safe place for patients and care partners to voice their experience, opinions, and ideas. GPFAB member, Kelly Foran, wrote a compelling blog on creating a culture and leadership style that values patient and care partner contributions, which you can read here.