How to be like Noirin: Informed Decisions for Cancer Patients
At Project Ronin, we focus on improving cancer patients’ experiences as they receive treatment for their disease. Currently, we primarily do that via our mobile patient application where patients record their symptoms and care teams are alerted if symptoms require a follow-up. We provide this access to their care team, because we know it helps patients to avoid hospitalizations and gives them peace of mind that someone is monitoring the symptoms they’re experiencing. A majority of our patients are currently participating in clinical trials and therefore they need this support even more as the symptoms they are experiencing are less understood.
I joined Ronin for many reasons, but the main driver was always my mother, Noirin Lucas, who battled breast cancer for nearly 8 years. Towards the end of her life, her doctors offered a new treatment that she had become eligible for. They were upfront that this treatment would not make her cancer go away, but could potentially extend her life longer than if she continued her current drug regimen or entered into palliative care. They also told her how serious the side effects would be and how the physicians really did not know what would happen to her while she was on the treatment.
My mom turned down the treatment. For 8 years, she had nobly lived and fought and managed as cancer changed her life. In this time, she ran the New York Marathon 4 times, worked a full-time job, and parented two teenage boys in the jungle of New York City. When she was offered another treatment, she felt she had lived life to the fullest and wanted to enjoy the time she had as best she could. That meant she would enter palliative care and not continue to fight in the same way, but to appreciate what she had.
I think about my mom’s decision to say no to a clinical trial often when thinking about the patients using our app. How many of them knew what their priorities were when they made the decision to enroll in a clinical trial? How many of them shouldn’t have enrolled because the cost to their quality of life was so high? Today, patients have already enrolled in a clinical trial when they start using our app and we are there to support them through their care.
But the value of our app long term is to empower patients in shared decision making. Most patients are not asked what their care preferences are whether that’s the most aggressive treatment or maintaining a higher quality of life. If they want to enroll in a clinical trial, we will be there to support them in managing their symptoms. If they wish to enter into palliative care, we will provide information on advanced directives and ways to have those conversations with your family, friends, loved ones, and physicians. My mom felt comfortable and confident enough to tell her doctor that palliative care was a better option for her than another treatment. How many patients have felt they can say that to their physician?
I cannot wait to see what our patient engagement platform evolves into. While it is already having a large impact, new features, new users, and new use cases will only grow its value. Eventually, we’ll be able to predict symptoms patients are likely to experience. These predictions will provide patients peace of mind and allow them to make even more informed decisions than they previously could have.
For now though, we’ll continue to focus on managing symptoms, intervening when the need arises, and being a bridge to their care team that previously did not exist.
