Advocate Angle – An interview with Runsi Sen, NRG Patient Advocate Committee Member

01/13/2026

Runsi Sen, MA, MBA, is the Founder, President, and CEO of Ovarcome, a global ovarian cancer foundation dedicated to raising awareness, funding research, and supporting patients and caregivers. Inspired by her mother’s ovarian cancer journey, Runsi has dedicated her advocacy to advancing patient education, health equity, and access to clinical trials. She has represented the patient and caregiver voice through speaking engagements at national conferences, including AACR, and as an Advocate Advisor on the MD Anderson SPORE grant, among other committees.

Recently, Ms. Sen was lead author of an abstract that was published by AACR:

Runsi Sen, Dr. Priya Bhosale. Understanding patient perceptions of clinical trials in ovarian cancer: Patient reported outcomes [abstract]. Proceedings of the AACR Special Conference in Cancer Research: Advances in Ovarian Cancer Research; 2025 Sep 19-21; Denver, CO. Philadelphia (PA): AACR; Cancer Res 2025;85(18_Suppl):Abstract nr A014.

Q: Can you share a bit about your background and what led you to become a patient advocate? How has advocacy changed your understanding of the research community?

A: I am an MS -MBA by training and was wrapped up in my work as an energy executive when my Mom got diagnosed with advanced ovarian cancer. She had only 11 months since diagnosis, but it was a lifetime’s worth of learning for me as I witnessed and experienced the challenges, the heartache, the limitations of treatment, and the devastation caused by ovarian cancer. My mom was my best friend, and my solace – her passing was a transformative experience for me. Her death revealed the purpose of my life. I quit my corporate career to create Ovarcome, an ovarian cancer foundation. What started as my personal mission, has now become a global force in the world of ovarian cancer advocacy.

In my role as the Founder & President of Ovarcome, I have had the privilege and the opportunity to work alongside many brilliant minds who are at the forefront or ovarian and gynecologic cancer research. I have an incredible appreciation for the researchers who spend countless hours and often their lifetimes in trying to find the next breakthrough so the rest of us can celebrate more milestones. Research will ultimately find the cure for cancer and give us the gift of a world without the scourge of ovarian cancer.

Q: Congratulations on the publication of your abstract in the AACR Journal Cancer Research. Can you describe your study?

A: Thank you! Dr. Priya Bhosale and I worked on this study to understand how patients diagnosed with ovarian cancer in underserved communities perceive clinical trials.

Specifically, we focused on the following metrics:

1. Patient understanding
   Via our Ovarcare Assistance Program in partnership with over 577 hospitals nationwide, we reached patients primarily treated in community centers and hospitals where information disparities are significant. We wanted to better understand how well patients could comprehend what clinical trials are – including their purpose, process, and potential benefits or risks.
2. Evaluate prior consideration and engagement
   As part of this study, we explored whether patients had previously considered enrolling in a clinical trial or evaluated their eligibility. We also investigated whether the care provider team had talked to them about clinical trials participation and options available to them
3. Measure willingness to participate
   As part of this study, we wanted to understand patient interest in participating in future clinical trials, and the knowledge gaps that exist today for them to make the decisions. We wanted to understand what patients in these communities think about clinical trial participation, and whether they find any benefit in considering it
4. Identify barriers and misconceptions
   As part of the study, we identified social, informational, logistical, financial, and provider-related barriers and challenges that may limit trial participation

Overall, our study was designed to uncover gaps between interest and actual engagement with clinical research, and to identify actionable targets – such as the extent of detailed information, physician communication, and support resources that could help to improve trial accessibility and equity in ovarian cancer care.

Q: In your view, what are the most important needs or concerns patients express when navigating clinical trials?

A: In our conversations with the patient community, it is clear that information dissemination is not uniform across all patient populations. Therefore, the needs and concerns vary greatly. The well-informed patients may be more receptive in getting enrolled on clinical trials and are actively seeking it, however, often, the trials have already recruited or have strict criteria for inclusion that limit participation. Other times the protocol may be overwhelming, the visits too many, the centers too far away, and disruptions in daily life, work, childcare, and social considerations become difficult to navigate.

A significant percentage of patients we serve via our Ovarcare Program are not aware of clinical trials, what they mean, and the benefits they may offer. Frequently, their healthcare providers do not discuss the possibility of clinical trial participation.

When we ask our community about what clinical trials mean to them and whether they have considered enrolling, we receive responses like the following:

“I would be interested in participating to help research. I want to help cancer research progress and want to feel like I can be a small part in helping other patients.”

“I understand what a clinical trial is. You are kind of like a guineapig and you’re being tested on. I have not considered enrolling in clinical trials. My oncologist has not discussed clinical trials with me.”

As you can see, the responses are varied and represent a wide spectrum in terms of knowledge, interest, understanding, and participation.

Q: How do you think research organizations can better support patients and caregivers during the clinical trial process?

A: Communication is key. Patients want to believe in the benefits of clinical trials, and they want to pay it forward for others in the future. In my opinion, the research organizations can better support patients by collaborating with credible advocacy organizations that patients rely on for helpful guidance, communicate clearly on the vision, goals, level of engagement, risks and benefits, and rewards or reimbursements if any for active participation.

We are working on developing such a program for our ovarian and gynecologic cancer patients, such that they feel empowered to make their decisions, and we make it a bit easier for them on our end by providing a few value-added services specific to clinical trials enrollment. Trial participation is easier with the promise of consistent communication, and by conveying the urgency of putting the patient’s mental and physical health as the most critical determinant in trial progression. The patient above all and everything else.

Q: How do you approach communicating complex or overwhelming information to patients and their caregivers in a way that feels manageable?

A: We at Ovarcome have created a Clinical Trials page (https://ovarcome.org/clinical-trials/) where our Ovarcomers and family members can search for active trials for ovarian cancer only. The first step is to filter the information to only what is necessary – it is already so difficult to navigate the overabundance of medical and scientific information that is accessible on the clinicaltrials.gov website across all cancers. Our page also has a video that explains the phases of clinical trials, and clinical trial navigators that are available to answer questions from patients and caregivers.

Enrolling in clinical trials is an active engagement, so it is important for the patient community to be able to fully comprehend the details of the trials they are interested in. Scientific information may be complex but explaining it in a modular and simple step by step approach may be easier to absorb. It is possible that the concept would need to be discussed and re-introduced a few times. Having direct access to the Principal Investigator is also important sometimes to help patients make decisions.

Information is complex in clinical trials, but ultimately, I believe there are always more patients that get the science and are interested to enroll than there are spots.

Q: What advice would you give clinicians or research staff who want to improve their communication with patients?

A: Few things:

1. Listen before you tell
2. Show that you genuinely care for the well-being of the patient above all else
3. Explain in simple terms but also prepare to answer difficult questions
4. Find ways to share hope concretely (how and when and in which way)
5. Accept a “no” without asking why after you have done your part explaining in detail

Q: What message do you hope to share with clinical trial participants or those considering participation?

A: Clinical trials bring hope and new therapies and treatments to change the outcomes. Learn everything you need to know about them – the phases, the potential benefits, risks, expectations involved, questions to ask, contact information of the PI and the IRB, and your options.

Know that your choice matters – enrolling or leaving a trial is your decision. It is your story of Ovarcoming, and you will write every page of it.