What is Big Data and Childhood Cancer Research
After being born and living in Turkey my whole life, I came to the US for college to study biological sciences at the University of Chicago. When the laboratory research internship I found for the summer of my first year was cancelled due to COVID-19, I joined a resume match program of my school’s Career Advancement Office, which matched students with employers based on experience and preferences. It was initially through this program that I matched with the Pediatric Cancer Data Commons (PCDC) and started working as their undergraduate summer intern. Later, this internship extended into a part-time job, and I worked with them for nearly a year.
Previously in high school, I had worked with a non-profit organization called Cancer Warriors (Kanser Savaşçıları) for more than a year. Through this organization, I had visited the pediatric hematology and oncology departments of an under-resourced public hospital and spent time with kids who had cancer by playing together and helping them with their schoolwork, which also gave their caregivers an, albeit small, interval to take a break. I also helped raise money through bake sales and donations to get toys, books, puzzles, etc. for the playrooms of the hospital. Although any impact I might have had was small and localized to a few individuals in this particular hospital, this still felt like one of the most impactful and rewarding experiences of my high school career. That is why when I started working for PCDC, I was very happy that I could build on the insight and experience I started to gain with this high school project to help take a step toward providing better resources for pediatric cancer patients and their families.
The PCDC is, as its name implies, a big data initiative aiming to promote and facilitate collaborative data sharing across institutions and countries. Although there is mounting evidence for the benefit of large-scale data sharing from a pediatric cancer research standpoint, an initial literature search showed us that in contrast, there was very little understanding of the perspectives of pediatric cancer patients and their families regarding the use and sharing of their data. That is why we created this project with the goal of getting an initial general idea of how aware pediatric cancer patients and their families are regarding what happens to their medical and clinical trials data after data collection, and what their perspectives are regarding the data use and sharing on a large scale. Our ultimate goal in asking these questions was to gauge how organizations like PCDC can best use their resources to provide the pediatric cancer community with more information.
To investigate these questions, we created an online survey and collaborated with pediatric cancer non-profit organizations, such as the Rally Foundation for Childhood Cancer Research, who very generously distributed the survey through their listservs. This poster presents the results of an initial, general analysis done on the survey results. It demonstrates the demographics of the population that took our survey, the ratings (on a scale of 1 to 5) that they gave for their levels of awareness for the different stages of their medical and clinical trials data lifecycle as well as the ratings (on a scale of 1 to 10) that they gave for their levels of concern about their current amount of knowledge and their interest in finding out more. It also includes some possible correlations between demographic and medical history related factors and these concern and interest ratings. What we are aiming to do in the future is to dig further into the results of this initial analysis to get a deeper understanding of these ratings and how they might translate into practical action by the PCDC for the pediatric cancer community.