By Adam Resnick, PhD, and Phillip “Jay” Storm, MD
The Children’s Hospital of Philadelphia (CHOP) welcomes Vice President Biden today as he visits Philadelphia and the Abramson Cancer Center to launch the White House’s “Moonshot” cancer cures initiative outlined in the State of the Union address. While here, he will meet with various UPenn and CHOP scientists, doctors, and patients representing our research campus’ advancement of new cancer therapies and novel immunotherapies. We and the patients and families who support our efforts are thrilled that the Vice President has chosen to come here to launch his initiative, as there is no more applicable and urgently needed “moonshot” than curing pediatric cancer.
Indeed pediatric brain tumors are the leading cause of disease-related death in children, and it is indeed the time for a new vision supporting new paradigms of discovery on behalf of children. In his recent post, the Vice President has honed his initiative’s focus to two key action items he has identified as necessary for accelerating progress towards a cure:
- Increase resources — both private and public — to fight cancer.
- Break down silos and bring all the cancer fighters together — to work together, share information, and end cancer as we know it.
Our institution’s clinicians and scientists and our partnering foundations and patients and their families couldn’t agree more! But we also know, that as challenging as the research and discovery landscape is in adult cancers, the difficulties are exponentially greater in the pediatric cancer arena.
The sequencing of the first human genome at the turn of the millennium ushered an era of continued technological advancements that are now driving the exponential production of rich, scientific data and the generation of ever larger scientific datasets. This “big data” genomics revolution defines a watershed moment in the empowerment of discovery with the number of new paths to therapies ever more numerous and rapidly growing.
However, “big data” science is a challenge and requires new types of both physical and human infrastructures for connectivity, collaboration, and access to be fully empowered.
While “big data” has transformed entire industries—from politics, to economics, to weather prediction and astronomy—within our own national research community, pediatric cancer research has recurrently faced challenges in obtaining the necessary resources to drive large-scale cancer data generation and has lacked the supportive infrastructures that fully harness the data-discovery power of these transformative technologies. Unfortunately, whatever limited pediatric cancer data has been generated to date by “big data” technologies has remained siloed, and genomic and healthcare data remain largely unintegrated and unempowered with limited access or the necessary opportunities for collaborative research.
As a result, it is precisely on behalf of those who are most vulnerable where change is needed most—where territorial boundaries around scarce data and limited infrastructure impede our progress. It is here that new models for collaboration, data sharing, and scientific integration are most needed and where they can be most impactful.
Open-Data Empowerment: A new disruptive model in biomedical research that will drive a new paradigm for precision medicine.
Many of the same forces driving the technological transformation of biomedical “big data” generation have similarly already transformed other information-based and/or media-driven economies. Many start-ups and communities that successful leverage the power of data and the internet have been disruptors of silos and outdated competitive practices through the acquisition of new values and principles:
- Prioritization of connectivity/collaboration over ownership
- Empowering data organization, aggregation, and sharing/democratized access
- Providing social, community-based architectures for participating peers that engage collaborative production and consumption
- Adopting, advocating for, and projecting open-source/open-access models/culture
In order to fully harness emerging genomic technologies and newly implement these principles for research on behalf of children, CHOP has engaged the active development of these principles in its research efforts and has recently developed first in kind open-access, de-siloing, data-driven discovery platforms that empower new diagnostic tools and personalized, precision therapies for rare childhood diseases and pediatric cancers.
To provide sustained, long-term support for these efforts and their expansion in direct alignment with the Vice President’s Moonshot initiative, CHOP’s Research Institute and Department of Biomedical Health and Informatics (DBHi) are launching a new institutional initiative for the development of a first of its kind Center for Data Driven Discovery in Biomedicine (D3b).
We will lead the Center’s planning and coordination. The initiative leverages and further supports the growth of large-scale interdisciplinary collaborative data-driven discovery infrastructures in CHOP-led multi-institutional research and clinical trial consortia, including the Children’ s Brain Tumor Tissue Consortium (CBTTC) and the Pacific Pediatric Neuro-Oncology Consortium (PNOC).
Working with CHOP leaders, collaborating hospitals, industry partners, and (most importantly) foundations, patients and their families, the Center initiative will build on CHOP’s investment in a new pediatric biospecimen and integrated diagnostics and data discovery open ecosystem. Leveraging scalable cloud computing for “big data” access and rapid analytics, Center programs will work with industry partners to provide secure, integrated data-discovery and biospecimen sharing platforms.
This groundbreaking, first in the nation Center builds on CHOP’s dedication to novel tissue-based diagnostics and pediatric data-driven research and will transform the pediatric “big data” discovery landscape on behalf of children. For the first time, a robust pediatric data generation and analysis infrastructure will fully empower open access, collaborative discovery and bring together local and national networks of hospitals and their clinicians and scientists.
The launch of this first of its kind center for Data Driven Discovery in Biomedicine (D3b) will support CHOP’s unwavering commitment to continued research innovation and new, data-driven precision medicine initiatives on behalf of all children suffering from pediatric cancers and other childhood diseases. We look forward to working with the Vice President and echo his clear mandate: “We must move forward, right now” on behalf of every child, everywhere, every time.