Introductory Section

At the Charlie E. & Minnie P. Hendrix Foundation for Chronic Illness, we believe healthcare is most effective when it reflects the voices of the people it serves. Patients and caregivers living with chronic illness bring lived experience that is essential to shaping equitable, patient-centered healthcare systems.

Our Patient Voice and Support Standards ensure patient perspectives are consistently integrated into healthcare guidelines, programs, and partnerships—particularly for underserved communities historically left out of decision-making.

Why Patient Voice Matters in Healthcare

Healthcare decisions made without patient input often overlook real-life challenges, barriers to access, and quality-of-life priorities. By centering patient voice, we help ensure that:

• Care guidelines align with patient needs and lived experience
• Health outcomes that matter most to patients are prioritized
• Underserved and marginalized voices are represented
• Trust is strengthened between patients, providers, and systems

Patient-centered care is not optional—it is essential for improving outcomes and advancing health equity.

What Our Patient Voice Standards Do

Our standards provide a structured, transparent approach to engaging patients and caregivers across all Foundation initiatives. These standards help us:

• Engage patients as partners—not passive participants
• Build representative patient cohorts
• Incorporate patient feedback into healthcare guidelines
• Measure impact and improve continuously

This approach ensures consistency, accountability, and measurable results.

 Our Guiding Principles for Patient-Centered Care

Our work is guided by five evidence-informed principles:

Partnership

Patients and caregivers are equal contributors in shaping healthcare solutions.

Equity and Inclusion

We prioritize diverse representation, particularly from underserved communities.

Transparency

We clearly document how patient input influences decisions and outcomes.

Standardization

We use consistent, validated methods to capture patient experience and preferences.

Support

Patients receive education, tools, and resources to participate meaningfully.

How We Apply These Standards

Our Patient Voice and Support Standards are embedded across all Foundation programs, including:

• Chronic illness education and advocacy initiatives
• Community-based healthcare programs
• Research and cohort-based guideline development
• Partnerships with healthcare systems and nonprofit organizations

This ensures patient-centered care remains central at every level.

How We Measure Impact and Accountability

To ensure transparency and funder accountability, we track:

Patient Engagement Metrics

• Number and diversity of patient and caregiver participants
• Percentage of programs with patient representation
• Ongoing participation throughout project phases

Equity and Access Metrics

• Inclusion of underserved populations
• Availability of materials in accessible and plain-language formats
• Reduction of identified access barriers

 Quality and Outcome Metrics

• Patient-reported outcomes and experience measures
• Satisfaction and trust indicators
• Adoption of patient-informed guidelines by partners

Sustainability Metrics

• Regular updates informed by patient feedback
• Long-term partner engagement
• Demonstrated improvements in care alignment

Our Commitment to Chronic Illness Communities

The Charlie E. & Minnie P. Hendrix Foundation for Chronic Illness is committed to advancing healthcare that reflects dignity, equity, and lived experience. By embedding patient voice into every stage of our work, we help build healthcare systems that truly serve the people who rely on them.

Get Involved

We invite patients, caregivers, healthcare partners, and community leaders to join us in shaping a more patient-centered future.

👉 Explore our programs
👉 Partner with the Foundation
👉 Support our mission

© 2026 Charlie E. & Minnie P. Hendrix Foundation for Chronic Illness. This material may not be reproduced or used without the express written permission of the Foundation.