"Behind Every Data Point Is a Person Navigating Their Own Reality. No 2 Journeys Are the Same."

Joslyn Chaiprasert-Paguio
Cervivor Ambassador and Podcast Host

How did you become involved in advocating for and/or participating in patient-centric outcomes research?

After my most recent recurrence of cervical cancer in 2021, it hit me that while science has advanced in both diagnosis and treatment, there was still a significant gap in patient knowledge. Despite the human papillomavirus (HPV) vaccine and early detection, the number of deaths from cervical cancer was increasing. My dear friend, Tamika Felder, started Cervivor, a patient advocacy group with a mission to empower those affected by cervical cancer to help spread awareness and influence change. I wanted to get involved and use my voice to help others, which led me to begin hosting the Cervivor Podcast.

What’s been the most rewarding thing for you about being a patient expert?

Part of being a patient advocate is sharing your story. Sometimes it can be triggering; other times, it creates a meaningful connection that may even change a life. Those moments of connection are truly the most rewarding part. Whether it’s hearing a mom say she will vaccinate her child against HPV or receiving feedback from a clinician who will remember my story when talking to patients about cervical cancer, those are the moments that make it all worthwhile.

What’s been the most challenging thing?

Lately, the most challenging and disheartening part has been the rise of misinformation and growing distrust in science and medicine. It’s difficult seeing how confusion and fear can stand in the way of prevention, early detection, and lifesaving care—but it has also become one of my strongest motivations. It reminds me why sharing accurate information, telling my story, and building trust through real, human connection matters so much. If even 1 person feels more informed, more confident, or more empowered to act because of that, then the effort is worth it.

What’s something that research too often overlooks or gets wrong about what’s important to patients?

In research, there is often a strong focus on data points, outcomes, and statistics, but the patient’s role and lived experience can be overlooked. Behind every data point is a person navigating their own reality. No 2 journeys are the same, and those differences matter. They shape how patients experience care, make decisions, and move through treatment and survivorship. When we take the time to listen, we gain a fuller understanding that data alone cannot provide.

HEOR often involves assessing costs vs benefits of treatments. In your opinion, what is one type of cost and one type of benefit that aren’t considered often enough in these analyses?

One type of cost that isn’t considered often enough is the emotional and psychological toll on patients and their families, specifically the anxiety, uncertainty, and disruption to identity and daily life that comes with a diagnosis and treatment. These aren’t easily quantified, but they are very real and can shape outcomes in profound ways. Patients are not just participants in a study, they are partners in it, and their voices deserve to be heard, valued, and reflected in the work we do.

On the other side, one benefit that deserves more attention is the value of hope and empowerment that comes from access to information, preventive care, and early intervention. When patients feel informed, heard, and supported, it can influence not only their health decisions but also their quality of life and long-term outlook.