Shared Experiences: Cancer Research Project Coordinator | Priyanka Bhakhri
Developed in partnership with Count Me In.
We spoke with Priyanka Bhakhri, a Project Coordinator at Count Me In X Count Me In: a patient-partnered organization working to put the patient voice back into cancer research..
Read on to learn about what drew her to cancer research, how she contributes to Count Me In’s mission daily, and what experiences at Count Me In continue to impact her.
What is your current role at Count Me In?
Priyanka: I am a Project Coordinator at Count Me In and have been with the organization for about two years now. Initially, I joined shortly after graduating from university as a clinical research coordinator. I had a short stint away from Count Me In and was drawn back in by the work, the team, and the mission. Our Project Coordinator team is a part of the operations team, working closely with project owners and managers to keep our research projects running smoothly.
Some of my day-to-day work entails contacting institutions for participants' medical records and engaging participants with follow-up communications. I work on Count Me In's Angiosarcoma, Metastatic Prostate Cancer, and Metastatic Breast Cancer projects. My work also involves data-related tasks. We’re currently preparing to publish our Metastatic Breast Cancer project data, which requires data cleaning on my part. Count Me In also received an extended grant for our Metastatic Prostate Cancer Project, so our team is contacting participants who agreed to give updated blood sample kits periodically. In the Angiosarcoma Project, we are writing a paper on the project’s findings which we are excited to submit for publication soon.
Our organization aims for all of this data to accelerate cancer discoveries, especially for cancers where treatment has been underfunded.
An important part of the mission is having participant/patient voices at the center of the work that we do. We’re behind the scenes of the data and medical record collection along with tumor samples. All of these pieces of information are valuable and we want to make sure we are transparent with the participants on how their data can make an impact.
Do you have a personal experience with cancer?
Priyanka: My grandmother passed away from liver cancer, which affected me personally as she used to live with us. I didn’t realize the gravity of cancer at that age or understand how it can shift the course of someone’s entire life. The experience of seeing what my grandmother went through sparked an interest in science for me. As a naturally curious person, I wanted to educate myself on what cancer was. I wanted to know what was happening in my grandmother’s body. I thought if I understood what had gone wrong then maybe I could process my grief better.
In undergrad, I studied biology. The genetic aspects of cancer intrigued me, how two people could be diagnosed with the same disease but one person becomes metastatic while the other person remains in remission. Studying biology and taking a class on the American healthcare system made me realize that a huge issue in the realm of patient experience/care was the missing patient voice.
Neither of my grandparents spoke English and I’m a first-generation immigrant. Both my parents worked several jobs part-time and full-time, so my sister and I attended doctor’s appointments with my grandparents. At only 13 years old, I was translating this medical jargon and diagnosis information to my grandparents without even understanding what it meant.
With medical research, there have historically been many issues with ethics, transparency, and other issues where the patient/participant voice is completely lost. Joining an organization like Count Me In that is actively putting the patient voice back into research just felt right to me. It resonated with me so strongly.
There’s a wealth of information that can be learned from each patient’s experience. At Count Me In, we give patients the opportunity to write out everything they’ve experienced during their cancer journey from a firsthand perspective. This is done through surveys and patient interviews. We collect this patient-reported data and combine it with medical history and tumor sample sequences to create a trifecta of data that unlocks endless research possibilities.
What has been the most impactful experience you've had with the cancer community while working with Count Me In?
Priyanka: Dr. Corrie Painter is one of the founders of Count Me In and is well-known in the angiosarcoma community. She’s the reason the Angiosarcoma Project was founded. This year, a clinical trial released its first set of data for potential therapeutics for angiosarcoma. That trial used some data published from our Angiosarcoma Project. I get goosebumps every time I think about it.
Conferences and workshops give us an opportunity to be a visible presence in the cancer community. I attended a research conference focused on rare disease and cancer research in Houston, and Dr. Corrie Painter presented about Count Me In and the work we are doing. During the Question/Answer forum, a woman came up to the mic. She had a son who passed away from a rare cancer, and she is now an advocate for the rare cancer community. She took a moment to thank Count Me In because she was so grateful for the research we’re doing for the community.
Working in a research lab or an administrative office can disconnect you from the community that you’re working to serve. Moments like those bridge that gap and remind me how truly impactful and possibly revolutionary the data and those stories can be. Our whole team had chills as we teared up listening to that mom’s story and her gratitude towards us. These moments remind us of the true gravity of what we are doing and all the lives across the world that could be impacted by this research. Those moments reground us, re-energize us, and motivate us to work twice as hard in the office the next day.
Why do you believe it is important to count every cancer experience?
Priyanka: No one can truly understand the impacts of a disease or a diagnosis more than the affected patients themselves. Someone diagnosed with cancer has to live every single day with that diagnosis and they understand their disease at an intimate level. It affects every facet of their life from their diet to how they wake up to how they sleep. No one can live that exact same experience because the experience is unique to each person. Having access to those details from participants sharing such intimate details about their day-to-day lives unlocks a completely unique set of data.
One of the many mysteries of cancer is why the exact same cancer diagnosis can impact two people in entirely different ways. Scientists in the past only looked at the biological foundation of the disease, and how cancer works on a cellular level. The modern cancer research realm is recognizing that combining the patient experience/patient voice with the genomic data leads to a wealth of information on how cancer works. Combining the patient voice with clinical research is essential, I believe, to accelerating any sort of cancer research discoveries.
Count Me In is a nonprofit patient-partnered research program that aims to accelerate the pace of cancer research by collecting and analyzing comprehensive data from patients with cancer. The program is a collaborative effort between patients, caregivers, researchers, and clinicians. To join the Making It Count movement, visit JoinCountMeIn.org.