By Zari McCullers

At a forum I attended in early October, I sat in a room filled with fellow researchers – primarily in the basic and biomedical sciences – ready to hear about the power of patient advocacy.

This event was meant to remind us not just why we do our work, but for whom. I felt a blend of curiosity and anticipation as the lights dimmed and the first panelist took the stage: an MD-PhD faculty physician, a distinguished figure who’d dedicated his life to science and medicine. To the stage, and the audience, he came not with a presentation of scientific data, but rather to share a personal story of loss: the death of his son to a fentanyl overdose.

In addiction research, data is a powerful ally. Numbers often guide our inquiries, revealing patterns and predicting outcomes. But this panelist’s words laid bare the raw human toll of addiction in a way that data never could. He shared how his life had pivoted from clinical studies to patient advocacy. In the wake of his loss, he was compelled by the desire to prevent others from experiencing the pain his family endured. As an aspiring addiction researcher with a personal connection to addiction loss, his message resonated with me. It underscored why patient advocacy cannot be an afterthought in biomedical research—it has to be the heartbeat. It is my, and my fellow researchers, responsibility.

From Research to Advocacy: Bridging the Gap

As biomedical researchers, we’re trained to maintain objectivity. We work behind the scenes of healthcare, uncovering mechanisms and developing health interventions. However, stories like the panelist’s remind us that the diseases we study are more than a sum of symptoms or behaviors; they are human lives, often fraught with struggle, heartbreak, and resilience. Addiction, for instance, is not just a brain disorder or a set of chemical dependencies. It’s a complex tapestry of biology, environment, and individual experience. For the families affected, it’s often a cycle of hope and despair.

According to the CDC, opioid-related deaths have risen sharply, with over 70,000 fatalities reported in 2022¹ compared to around 7000 in 2002², underscoring that this crisis shows no signs of slowing down. These are not just numbers. These statistics are reminders of the impact on countless families and communities. For a researcher, it’s easy to think of these numbers in terms of trends or epidemiological data. But in advocacy, we are asked to consider each statistic as a person, each person as a story.

What it Means to Be an Advocate in Biomedical Science

Patient advocacy in biomedical science asks us to engage beyond the bench or clinical study. It encourages us to listen to patients and families, incorporate their experiences into our hypotheses, and sometimes reshape our research questions to be not only innovative but also impactful. Through this patient advocacy forum, I was reminded that advocacy can take many forms: promoting funding that targets prevention, pushing for interventions that address disparities, and supporting policies that acknowledge people’s diverse needs. Examples of these diverse needs can include promoting access to culturally competent care, such as biological sex & gender-specific treatment, and policies for those in under-resourced communities.

As someone who studies sex differences in alcohol use and binge eating, I see the potential for targeted approaches to addiction treatment, especially when we consider the complexity of individual differences in addiction. For example, research suggests that women might be more vulnerable to certain aspects of addiction, including binge eating and alcohol use, due to both biological and psychosocial factors². In advocacy, we’re not just asking “what works” in a general sense but also “what works for whom,” ensuring that interventions reflect the diversity of patient experiences.

An Ongoing Commitment to the Faces Behind the Data

One takeaway from the advocacy forum was clear: research doesn’t stop at publication. As researchers, it’s our responsibility to move findings from the lab into meaningful conversations with those who can use them—clinicians, policymakers, and most importantly, patients and families. The panelist’s journey from research to advocacy was a powerful reminder that the science we do has a real-world impact that is sometimes life-changing.

The urgency of patient advocacy in biomedical science has perhaps never been clearer. The COVID-19 pandemic, the opioid crisis, and rising mental health challenges⁴ are stark reminders that our work must extend beyond publications and presentations. We owe it to every person represented by those statistics to be as committed to their well-being as we are to discovery. Patient advocacy isn’t just an addition to our work—it’s an essential layer that brings science from the abstract to the humane.

As I sat through the speaker’s talk, inspired and reflective, I realized that my work as an addiction researcher has a deeper purpose. I am not only studying the science of addiction but also advocating for the people affected by it, recognizing their stories as integral to our pursuit of knowledge. Moving forward in my research journey, I will carry the panelist’s story as a reminder of why I chose the path of biomedical research and the responsibility that comes with it. As you spend time designing experiments, or working long days in the lab, I encourage you to think of the impact your research could have on patients’ lives, to remember our responsibility as scientists.

TL;DR

• As researchers, we should explore the role of patient advocacy in our respective fields, taking inspiration by real loss and struggle of patients and families.
• We should emphasize placing human stories at the center of impactful, compassionate research.

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Reference

1. Centers for Disease Control and Prevention, National Center for Health Statistics. Multiple Cause of Death 1999-2022 on CDC WONDER Database, release 4/2024. https://wonder.cdc.gov/
2. Chen LH, Hedegaard H, Warner M. (2014). Drug-poisoning deaths involving opioid analgesics: United States, 1999–2011. NCHS data brief, no 166. Hyattsville, MD: National Center for Health Statistics. https://www.cdc.gov/nchs/products/databriefs/db166.htm
3. Flores-Bonilla, A., & Richardson, H. N. (2020). Sex Differences in the Neurobiology of Alcohol Use Disorder. Alcohol research : current reviews, 40(2), 04. https://doi.org/10.35946/arcr.v40.2.04
4. Nikhila S. Udupa, Jean M. Twenge, Cooper McAllister, Thomas E. Joiner, (2023). Increases in poor mental health, mental distress, and depression symptoms among U.S. adults, 1993–2020, Journal of Mood and Anxiety Disorders. Volume 2. https://doi.org/10.1016/j.xjmad.2023.100013