What first drew you to health equity?

I came to this work through lived experience. Long before I had language for concepts like “health equity,” “patient engagement,” or “community-centered research,” my own experience with the chronic inflammatory disease endometriosis exposed me early on to the consequences of delayed diagnoses, limited access to quality care, fragmented and heavily siloed healthcare systems, and significant gaps between what patients need and what systems can provide, either by intention or design.

What began as a search for information and better care for myself, at a time when both were very limited, became a commitment to helping others navigate those same barriers. Over time, I came to understand that the challenges I was seeing were not simply my individual healthcare experiences. They were reflections of a larger structural problem involving access, evidence, policy, reimbursement, research priorities, gender bias, stigma, epistemic injustice, and whose knowledge is valued in healthcare.

That realization drew me increasingly into public health and health equity work through the lens of the disease - truly a public health issue - and continues to shape the efforts I carry on today.

What experiences, people, communities, or moments have most shaped your professional path?

The endometriosis community has shaped my professional path more than anything else, full stop. For more than three decades, I have worked in disease education, research facilitation, awareness, and advocacy. Interacting with literally thousands of people who have described the barriers they encountered before reaching appropriate care - as I did four decades ago - has given me an unusually long view of both what has changed…and what has not.

My deeply lived experiences with endometriosis and, later, overlapping chronic conditions remain foundational. They have taught me that experiential knowledge is not secondary to professional expertise. Each can reveal things the other cannot.

Over time, opportunities to contribute to research, peer review, health policy, evidence evaluation, and patient-centered outcomes work have further broadened that perspective. Working with researchers, clinicians, policymakers, advocates, and community members has taught me how much stronger healthcare becomes when all stakeholders are included - not simply as participants or advisors at the end of a process, but as meaningful partners throughout it.

Tell us about a challenge or period of change that influenced how you approach your work.

One of the most important changes in my work has been moving from primarily helping individuals navigate an inadequate system to asking how those systems themselves can be changed.

For years, much of my advocacy focused on filling gaps: helping people find reliable information, access appropriate care, understand their options, and advocate for themselves. That work remains essential and continues today, but eventually I became increasingly interested in why those gaps persisted in the first place.

That shift changed how I approach almost everything. I began looking more closely at research design, evidence generation, reimbursement, policy, professional education, agendas, and the structures determining which voices influence healthcare decisions.

It also taught me that meaningful change is rarely produced by one discipline or constituency acting alone. Patients, clinicians, researchers, policymakers, and communities may bring different forms of expertise, but sustainable change requires mechanisms for those perspectives to inform one another. I now approach my work with much greater attention to partnership, shared responsibility, and the structures necessary to make participation meaningful rather than symbolic.

What perspective, commitment, or way of working do you carry forward today?

I carry with me, at all times, a fundamental belief that lived experience is a form of expertise and that people most affected by healthcare decisions - the credible messengers - must have meaningful opportunities to influence them.

For me personally, meaningful engagement means more than inviting a patient or community representative into a room. The days of performative and helicopter engagement are over. Now, we must continue to create conditions in which lived knowledge genuinely affects priorities, methods, interpretation, implementation, and communication.

I also try to remain comfortable working across boundaries, which often takes introspection. My work sits at the intersection of patient advocacy, clinical care, research, policy, and community engagement. Those spaces do not always speak the same language or measure success in the same way. So I have learned that part of my role is often to help translate among them while keeping the people ultimately affected by those decisions visible throughout the process.

What are you continuing to build, explore, or contribute at this point in your journey?

At this point in my very long and oftentimes arduous journey, I am especially interested in building sustainable models for continuous community partnership across healthcare and biomedical research.

Too often, patient and community engagement occurs at isolated points: a consultation, an advisory meeting, a review panel, or a dissemination activity after the most important decisions have already been made. I am interested in what becomes possible when community expertise is incorporated throughout the lifecycle of research and healthcare innovation, with shared governance, appropriate compensation, accessible communication, and clear evidence of how community input influenced the work.

That interest took more concrete shape during my recent experience in the 2026 University of Maryland School of Pharmacy’s PATIENTS Professors Academy. The Academy gave me the opportunity to examine years of experience in advocacy, research, and community engagement through a very different lens and think intentionally about how meaningful partnerships could be made sustainable and scalable.

From that work, my fledgling program, CAPER - the Continuous Academic-Patient Engagement in Research model - was born from my capstone and became my next passion project. CAPER is centered on moving beyond episodic or tokenistic engagement toward continuous partnership across the research lifecycle, recognizing lived and community experience as expertise and creating structures through which that expertise can meaningfully influence the work.

I continue to contribute to endometriosis advocacy and specialized care while expanding my involvement in research review, patient-centered outcomes, health policy, and community-academic partnership. Increasingly, I am interested not only in having a seat at existing tables, but in helping design better tables.

What do you hope another person might take from your story?

I hope someone might recognize that there is no single pathway into public health, advocacy, research, or health equity work. My path did not begin with a formal career plan. It began with an illness, unanswered questions, and the realization that others were struggling with many of the same barriers.

One opportunity led to another, and lived experience gradually became advocacy, advocacy became professional expertise, and that work opened doors into direct patient care, research, policy, and systems-level change.

I hope someone reading my story understands that the knowledge gained through lived and community experience has value. You don’t have to arrive through the so-called traditional doorway to make a meaningful contribution. Sometimes the experience that first shows you where a system is failing can ultimately become part of the expertise you use to help change it.

Is there anything else you would like us to understand about you or your work?

Although endometriosis is the foundation of my work, I increasingly view that work through a broader health equity lens. The challenges surrounding endometriosis - diagnostic delay, disparities in care access, gaps in research, reimbursement inequities, geographic and financial barriers, and the historic undervaluing of conditions affecting women and people assigned female at birth - are connected to much larger questions about whose health is prioritized and whose experiences count as evidence.

I have also learned that advocacy can evolve without leaving its origins behind. I remain deeply connected to individual patients and their experiences even as my work has expanded into research, policy, evidence review, and systems change. Maintaining that connection helps keep the work grounded in the people these systems ultimately exist to serve.