The nine-year-old patient sat in his bed, nose buried in a book, his peach-fuzz hair just visible over the book he held close to his face. As my mentor quietly began explaining the next steps of his treatment to his family, I crouched next to the bedside to ask him about his book, which I had loved dearly in elementary school. Neither the patient’s beeping machines nor his swollen body slowed him down as he began excitedly chattering to me about the story. A few minutes later, we thanked the family and moved onto the next room.* This child was just one of many leukemia patients whose story and data I had pored over in my clinical research experience this summer.
Having spent two summers in a lab, this past summer I was determined to participate in work that felt tangible and relevant to patients. I was working at the Children’s Hospital of Philadelphia (CHOP), focusing on pediatric acute myeloid leukemia (AML). My tasks were technical and often painstaking, translating scattered clinical notes and information into data that could help us identify patterns across hundreds of patients. I spent hours pulling out details on chemotherapy regimes, lab results, medications, management of symptoms, and genetic mutations. I also organized and structured data, read countless scientific articles to familiarize myself with cutting edge research and clinical trials, and attended clinical tumor boards, research meetings, and conferences at CHOP and the University of Pennsylvania.
The diversity of cases I worked on was staggering. Having worked in a lab, I was accustomed to a core scientific principle in basic research – any results should be replicable. In clinical research though, cases aren’t so clear-cut and dry. Patients came from different places, spoke different languages, and tested positive for different mutation combinations that change their prognoses. Patients started and ended medications with different dosages based on individual toxicities and symptoms, financial and/or logistic constraints, or questions about intensities of treatments they wanted to undergo. Many patients for whom treatment hasn’t been effective enrolled in different clinical trials, where even the physicians are at times exploring and trying new combinations of chemotherapy at different dosages, timings, etc. This diversity and range of treatments was especially true with our patients. Children with AML are often in critical condition and even in a clinical trial, a physician’s priority is always the patient’s well-being, not clean or pretty data. Unfortunately for the clinical researcher, that makes it difficult to collect standardized data for a rare disease such as this.
This becomes an issue when we are trying to make progress with limited information on a small patient population – how can we decide whether maintenance therapy (a continuous low dose of chemotherapy for a certain amount of time to try and prevent the cancer from coming back) is effective when close to 60% of patients in the clinical trial aren’t able to stay on this regimen for logistical reasons, unfavorable responses to the chemo, or other such problems? Clinical researchers then employ a host of methods to try and make up for missing and imperfect data.
I found this work to be more interesting than lab work precisely because it was realistic and messy! A gripe I’ve had with lab-based research is that data always has to be clean and precise, and this occasionally creates arduous, repetitive tasks for the researcher (such as repeating their experiments over and over again). In clinical research, it’s no one’s fault that we have the data that we have, and instead of repeating it again until we get something useful, we have to make do with the information we have in front of us to try and do what’s best for our patients.
My advice for anyone who’s interested in research as a future physician is to get involved with clinical research as an undergraduate. As an academic institution without a medical school, most research opportunities for future physicians at Princeton lean towards the basic sciences. This research was tangibly connected to patient care, and it was eye-opening to learn about medical care and the questions that physicians, patients, and their families consider while contributing to valuable and impactful research.
— Gabriel Ascoli, Humanities Correspondent
*Patient details were changed for the purpose of anonymity.
