There are moments in your life that change the way you see our healthcare system forever. For me, those moments didn’t happen in a classroom, on a conference call, or even throughout my career in Pharmaceuticals. They happened as a patient. They happened in hospital rooms, emergency departments, and during conversations with clinicians who took the time to truly listen—and especially with those who didn’t.

Living with sickle cell disease has given me a lifetime of patient interactions and experiences. It has also given me a unique perspective as a patient advocate and as an ICHOM Board member. Those experiences have taught me one simple truth: quality healthcare begins by asking one question…”what matters most to the patient?”

Far too long, healthcare has measured what is easiest to count instead of what matters most to the people receiving care. We have become very good at measuring processes, procedures, and utilization. While those measures are important, they are only part of the story.

As patients, we don’t judge healthcare and providers by the number of appointments we’ve attended or the tests we’ve completed. We measure it differently.

Can I spend time with my family? Can I return to work? Can I attend a family function? Can I travel without fear? Can I live with confidence instead of uncertainty? Those are outcomes that matter.

When we begin measuring what patients value, overall healthcare changes. Conversations change. Decisions change. Relationships change. We move beyond simply treating a disease and begin to see the individual patient and support that person’s life.

I believe that measuring outcomes isn’t just about collecting more data…it’s about ways to create better lives.

Data has tremendous value, but only when it leads to actions and results. A patient-reported outcome shouldn’t end up in a database never to be seen again. It should spark a conversation. It should help clinicians recognize when someone is struggling. It should guide shared decision-making practices. It should inspire healthcare organizations to methodically improve the care they provide. Most importantly, we must remember that every data point represents a human being.

Throughout my advocacy journey, I’ve also learned that asking patients for feedback is not the same as partnering with patients.

While healthcare has made progress in inviting patients to the table to share their experiences, true partnerships go much further. It means including patients before decisions are made, not after. It means inviting patients to help design services, improve care pathways, develop outcomes that matter, and evaluate whether we’re making a meaningful difference. The involvement of patients should always be more than a “check the box activity.

Patients should not simply validate healthcare decisions; they should help shape them. That philosophy is one of the reasons I believe so strongly in ICHOM’s mission.

Worldwide, ICHOM is helping create a common language around outcomes that matter most to patients. That language brings together providers, researchers, health systems, policymakers, and patients with a shared purpose: improving lives through value-based healthcare.

I value how ICHOM recognizes something many of us have known for years…that lived experience is expertise. By combining clinical knowledge with the wisdom of patients and families, we design healthcare that is more compassionate, more equitable, and ultimately more effective. This work has never been more important.

Healthcare is advancing at an incredible pace. New technologies, precision medicine, artificial intelligence, and groundbreaking therapies are changing what is possible. But innovation alone is not enough. If we fail to ask whether these advances improve the outcomes that matter most to patients, we risk measuring progress without truly improving people’s lives. The future of healthcare will not only be defined by how much data we collect, but by how well we use that information to help people live healthier, fuller, and more meaningful lives.

I remain optimistic because I see that future taking shape every day. I see clinicians who are eager to listen. Researchers who want to partner with patients. Healthcare leaders who understand that value is measured not only by clinical outcomes but by the lives those outcomes make possible. I see organizations like ICHOM supporting healthcare systems through care standards and helping drive value-based healthcare.

Together, we can build systems where every patient is heard, every outcome has meaning, and every decision is guided by what matters most. That is the future worth measuring. And it is a future worth building.