By the age of 30, AGBU Scholarship recipient Ani Haykuni felt unstoppable. She’d trained and earned degrees in mechanical engineering, environmental science and international relations and had worked for the United Nations and the World Wildlife Fund. Set to embark on the next rung of the professional ladder, she’d secured a coveted spot in the prestigious MBA program at Oxford University, complete with complete with an AGBU scholarship. But a routine checkup revealed a diagnosis that changed the course of Haykuni’s life, sending her down an unexpected personal, and professional path. The budding entrepreneur had stage three breast cancer, and the need for immediate treatment put her life on hold.
Stoic though she may have been on the surface, Haykuni realized she was facing a complex challenge on multiple levels. She had lost a beloved uncle to cancer, and while she was prepared to combat her illness the way her uncle had: with faith in medicine, self-care, and a positive attitude, Haykuni immediately ran up against unexpected issues. Her first challenge was purely financial: learning that insurance in Armenia does not cover cancer treatment.
“Despite my earnings as an engineer, I struggled to pay my medical bills. I wondered how others with less means could possibly fight such a deadly illness without financial resources,” she says. Undeterred, she established the Ani Haykuni Cancer Treatment Support Foundation, a non-profit that continues to lend financial and psychological support to Armenians fighting cancer in their country.
Haykuni deferred her Oxford admission while she received treatment in Armenia, soon encountering yet another, more pervasive issue, one without borders or boundaries. She noted that her appointments with her oncologist were extremely episodic, and disturbingly brief. From online forums, she read that seeing an oncologist once a month, for ten or fifteen minutes, was an accepted, albeit universally disliked, norm, throughout the world.
“I was frustrated by the brevity of those appointments. My engineering mind sought metrics that could help me understand what was happening,” she recalls. “I wanted statistical information about everything; from my symptoms to side-effects, emerging protocols, and more.” Finding no shared repository for such information, she posted her questions and experiences on social media, receiving an avalanche of responses from other cancer patients whose sentiments echoed hers.
I didn’t panic when I was re-diagnosed—I viewed it as a different kind of alarm. With my MBA completed, I felt prepared to create the one solution I’d wished existed when I was initially diagnosed in 2015.
While the responses provided Haykuni with a sense of community, they also gave her a kernel of a bigger idea, one she would not pursue until 2019. Two years after her 2017 Oxford graduation, a periodic screening revealed a new tumor, a dreaded recurrence of her disease. But this time Haykuni went beyond the social networks and cancer forums, applying to the Oxford University Innovation (OUI) lab, a start-up incubator that funds promising technical advancements. Her proposal was for an ambitious digital project that could solve the issue of disparate cancer information.
“I didn’t panic when I was re-diagnosed—I viewed it as a different kind of alarm. With my MBA completed, I felt prepared to create the one solution I’d wished existed when I was initially diagnosed in 2015,” explains Haykuni.
Vann is designed to become a digital platform that enables patients to record and discuss their symptoms outside of their scheduled check-up appointments. The platform will collect a myriad of self-reported information from patients; everything from their vitals to side effects, adverse reactions, and impacts on mental health. With user consent, and anonymity, Vann will make this information available to other patients and doctors, helping clinicians make more informed decisions about treatment. The platform could further provide anonymised datasets for researchers, which can aid in targeted drug development, best practices, and longitudinal research.
The goal of Vann is to collect and share resources, experiences and information about every aspect of cancer, all in one centralized web platform and app. Patients would no longer have to struggle to remember information imparted during a brief doctor’s visit, or wait for the next monthly appointment to ask a question. Even when a patient is through with treatment, their post-cancer journey can present a new set of variables and questions, whether about lingering side effects, and the worry of recurrence. By putting the vast resources of the community at their fingertips, Haykuni seeks to relieve the invisible symptoms of cancer: anxiety and depression.
Already, the project has gained momentum and support beyond that of the OUI, and Haykuni’s vision for the platform has expanded. “One of the advantages of Vann is my experience as a patient and two-time cancer survivor. To address issues related to the vast arena of cancer, there has to be a collaborative approach. Vann has the potential to become the single platform for the exchange of information across the institutions involved in cancer research, therapeutic interventions, and patient care.”
While Haykuni might not have chosen the route that inspired her innovation, she remains optimistic. “I’m not saying Vann is the answer to everything for a cancer patient,” she says. “But when I was a patient, I really needed to feel supported to get to my place of strength. It’s not an easy road for any cancer patient. But when fully launched, Vann will provide vast amounts of knowledge, resources, and hope at their fingertips, when it’s needed most.”
Banner photo by Vanessa Berbian.