Patient Advocacy in Action
Partnering to Strengthen Voices in Research and Care
Patient advocacy is not a concept—it is a lived necessity.
It is what happens when someone in the middle of a medical crisis tries to understand complex decisions. It is what happens when families are navigating hospital systems they never expected to enter. And it is what happens when lived experience is finally brought into the spaces where health care decisions are made.
At Sandal Blue Foundation, we believe patient advocacy is strongest when it is shared, structured, and community-driven. That is why our partnership with the University of Maryland School of Pharmacy’s PATIENTS Program has been such an important part of our work.
A Shared Mission: Centering the Patient Voice
The PATIENTS Program is a nationally recognized community-academic partnership that works to ensure patients, caregivers, and communities are not just participants in research—but co-creators of it. Their work focuses on building trust, improving communication, and strengthening the way research reflects real lived experience.
At its core, their mission aligns deeply with ours:
- People closest to the problem should help shape the solution
- Lived experience is essential data
- Trust is built through consistency and collaboration
- Health equity requires intentional engagement
This is patient advocacy in action—not as a service provided, but as a system built together.
Expanding Impact: PATIENTS Going National
One of the most powerful expansions of this work is the PATIENTS Going National initiative, which extends their community-engaged research model beyond Baltimore to communities across the United States.
This initiative is designed to bring patient and community voices into research at a national scale by partnering with groups connected through shared experiences such as chronic illness, disability, mental health, aging, and more.
Rather than treating communities as passive recipients of research, this model recognizes something critical:
Communities are experts in their own lived experience.
Through PATIENTS Going National, those lived experiences are being actively integrated into how research questions are formed, how studies are designed, and how health solutions are developed.
You can learn more about the initiative here: The PATIENTS Program and their national expansion effort.
Why This Matters for Patient Advocacy
Patient advocacy is often thought of as something that happens at the bedside or in a hospital hallway.
But true advocacy also happens upstream—in research design, policy development, and system planning.
When patients are included early in the process, everything changes:
- Research becomes more relevant to real-life needs
- Communication becomes clearer and more respectful
- Barriers to care are identified sooner
- Solutions are shaped by lived experience, not assumptions
This shift is what makes partnerships like ours with the PATIENTS Program so meaningful. It moves advocacy from reaction to co-creation.
What We See in Practice
Through this collaboration, we see a consistent truth:
When people are given space to share their lived experience—and when that experience is taken seriously—systems begin to change.
We see:
- Caregivers who finally feel heard in clinical conversations
- Survivors whose experiences help shape research priorities
- Communities contributing insight that improves how care is delivered
- A growing culture of trust between institutions and the people they serve
This is what it looks like when advocacy is not an afterthought, but a foundation.
Moving Forward: Building a More Inclusive Future in Health Care
Patient advocacy is not static. It grows as systems listen more deeply and include more voices.
The PATIENTS Program’s expansion through PATIENTS Going National represents a shift toward a more inclusive model of research and health care—one where patients are not just subjects of study, but active partners in shaping the future of health.
At Sandal Blue Foundation, we are proud to stand alongside work that reflects this belief:
Health care is strongest when it is built with the people it serves—not just for them.
Closing Thought
Advocacy begins with listening.
But it becomes powerful when listening turns into action—and action turns into shared ownership of change.
This partnership reminds us that when patient voices are centered, health care becomes more human, more accurate, and more just.
And that is the direction we are committed to moving in—together.
