Diane Heditsian was first diagnosed with breast cancer in 2002. From the outset, she realized that her prognosis was not only dependent on her medical treatment but also on her ability to advocate and take ownership of her own care. Heditsian knew firsthand that the more patients are engaged in their care, the better their outcomes. Over the next 23 years and through four separate breast cancer diagnoses, what began as an act of personal survival evolved into something more profound: a lifelong passion for empowering others to become their own advocates and ensuring the patient’s voice remains front and center in cancer research.
Heditsian explained, "I felt compelled to speak for those who couldn’t—either because they were too busy battling their disease or because they had already passed away."
Patient advocates play a vital role in cancer research by ensuring patients' concerns and experiences are central to the treatment process. They work alongside internal review boards, data safety monitoring committees, advisory committees, scientists, and clinicians to shape research, guide novel treatments, and influence research funding allocation.
By amplifying the voices of those affected by cancer, advocates like Heditsian help ensure that clinical trials are designed to both advance science and improve the lives of those affected by cancer. It’s about ensuring that those most affected by treatments have a meaningful role in guiding research. Ultimately, cancer research isn’t just about science—it’s about people.
Stanford Breast Cancer Metastasis Center
Through the National Cancer Institute’s Metastasis Research Network (MetNet), Heditsian and fellow patient advocates collaborate with Stanford Cancer Institute member Christina Curtis, PhD, MSc, the RZ Cao Professor of Medicine, Genetics, and Biomedical Data Science at the Stanford Breast Metastasis Center. Curtis’ research focuses on uncovering the factors driving metastatic breast cancer by identifying key therapeutic vulnerabilities and mechanisms of resistance. The goal is to improve treatment options for patients in advanced stages and ultimately eradicate the disease.
Embedded within Curtis' lab, advocates help integrate the patient experience into Curtis' research. During monthly meetings and serving as advocate advisors on clinical trials, they engage in meaningful scientific discussions, offer insights from a patient's perspective, and mentor trainees on the broader implications of their work. Heditsian explains that research often focuses on narrow areas of science, but she helps researchers keep the bigger picture in mind to improve patients' lives. Most researchers haven’t lived through the disease. They may understand the science, but they don't know what it feels like. Patient advocates’ unique perspective comes from their firsthand experience, including the burdens of treatment, the impact on daily functioning, side effects, and underlying motivations that drive patients.
Heditsian and fellow advocates mentor junior researchers in Curtis’ lab and the broader MetNet community. Additionally, they will lead a workshop on writing lay abstracts to help researchers communicate their work to readers across varying levels of scientific literacy and gain insights into the disease from the patient's point of view.
Heditsian shares, "It's incredibly fulfilling because they are eager to learn, and I know what I share with them will stay with them throughout their careers. They’re grateful for the opportunity to see the disease from the patient’s point of view, especially since many of them have never interacted directly with a patient."
“We deeply value the input of patient advocates in many aspects of our work. Although our MetNet-funded research focuses on basic science, which has a long path to clinical application, our ultimate goal is to improve patient outcomes. The Stanford Breast Metastasis Center has greatly benefited from their perspectives and expertise,” notes Curtis.
Patient advocates highlight barriers to clinical trial participation, such as the logistical burden of frequent appointments, transportation struggles, and childcare issues. They work alongside researchers to help recruit participants from underrepresented patient populations and push researchers to design protocols that address real-world concerns—minimizing side effects, improving treatment adherence, and prioritizing quality of life. For example, Heditsian explains that phase 1 trials were traditionally designed to determine the maximum tolerated dose—the highest dosage that doesn’t cause unacceptable side effects. Patient advocates are turning this approach on its head, arguing that researchers should ask: What’s the minimum dose required for efficacy?
“We have to keep pushing to have a seat at the table, and we’ve come a long, long way. I’m just one drop in the bucket,” says Heditsian. “Our voices are being heard and are continuing to make a difference.”
Patient Advocacy Training in Health Sciences
Stanford’s Patient Advocacy Training in Health Sciences (PATHS) program is a new, seven-session course starting this month, designed to create Stanford’s first-ever cohort of trained patient advocates with the knowledge of the research process to serve as partners in translational research. Funded through Stanford’s National Institute of Health (NIH) Clinical and Translational Science Awards grant (CTSA), the PATHS program was inspired by the success of the National Breast Cancer Coalition’s Project Lead, a science training program for breast cancer advocates whose graduates have significantly contributed to the breast cancer research ecosystem.
Stanford Cancer Institute member Steven Goodman, MD, PhD, associate dean of Clinical and Translational Research, who leads the translational workforce development program of the CTSA, has trained patient advocates through Project LEAD for many years. His experience inspired him to design a similar program at Stanford extending beyond breast cancer to train advocates across a broad spectrum of diseases. To develop the PATHS program, he collaborated with epidemiology colleague and fellow Stanford Cancer Institute member Lisa Goldman Rosas, PhD, MPH, co-director of Community-Engaged Research for the Stanford Cancer Institute Office of Cancer Health Equity. Through the PATHS program, participants will gain an understanding of the language and key concepts in health research, enabling them to engage in advisory boards, grants, research proposals, and data monitoring committees, among other opportunities, and learn how the patient voice can shape research priorities and enhance care.
"This program reflects an institutional commitment from the highest levels to integrate the patient perspective into research," says Rosas.
Goodman believes the ideal patient advocate is well-trained, knowledgeable, and capable of fully partnering with researchers. Simply having a patient in an advocate role doesn't make them an effective partner without the proper training.
He underscores, "If patients don’t speak the language or understand what researchers are saying, they just become tokens in the process, and that’s not good for anyone."
The PATHS program offers two key benefits. It enables researchers to conduct better, more patient-centered research through the participation of trained patient advocates. At the same time, it fosters a sense of investment in the research process within the community, helping people understand that true progress happens when patients and researchers work as partners. This is particularly important for advancing health equity because research that doesn't account for all groups can widen disparities.
"The most precious commodity in research is trust. The trust of patients and the community that our work is for the collective good. The more the values of science and the patient community complement each other, the stronger that trust becomes. Our mission is to build a more informed public and research enterprise so we can move forward together, hand in hand," explains Goodman.
