With the rapid rise in genomic profiling and molecular analysis of varying degrees of cancerous tumors, there has been an exponential explosion of clinical data being gathered. Researchers have not only struggled with how to store and interpret this digital information but arguably, more importantly, have been searching for ways to efficiently disseminate this data among researchers to better facilitate patient care and improve clinical outcomes.

A new study from an international team of researchers addresses many of the current concerns facing the big data field and highlights the potential of this data to unlock the secrets inside cancer cells and enable the development of more effective personalized treatments.

“The term “big data” refers to huge amounts of information that can be analyzed by high-performance computers to reveal patterns, trends, and associations,” explained co-lead study author Mark Lawler, Ph.D., professor at Queen's University's Centre for Cancer Research and Cell Biology. “In medical terms, this includes clinical and genomic data that is derived from patients during, for example, diagnostic testing and treatment.”

Dr. Lawler is also co-chair of the Cancer Task Team of the Global Alliance for Genomics and Health (GA4GH), which was established in 2013 to create a common framework for the responsible, voluntary, and secure sharing of patients' clinical and genomic data.

“With the development of new technologies that have enabled the rapid and affordable profiling of cancer tumors, there has been an explosion of clinical and genomic data,” noted co-lead study author Lillian Siu, M.D., professor at the Princess Margaret Cancer Centre and the University of Toronto. “Hospitals, laboratories, and research facilities around the world hold huge amounts of this data from cancer patients. But this information is currently held in isolated 'silos' that don't talk to each other. It is this lack of information sharing that threatens the advancement of tailored patient care.”

GA4GH was devised to address many of the issues that are of concern to clinical genomic researchers and is a partnership between scientists, clinicians, patients, and the IT and life sciences industry involving more than 400 organizations in over 40 countries, and has published today's paper as a blueprint to enable the sharing of patient data to improve patient outcomes.

“Cancer is an incredibly complex disease, and it is constantly changing. Each person's cancer is different,” Dr. Lawler remarked. “The key to staying ahead in the fight against cancer is to properly understand how the disease evolves. We need to look at the big picture and identify patterns between groups of patients, whose information currently resides in different databases and institutions. To do this, we must break down the 'data silos' that Professor Siu refers to and ensure that genetic and clinical information is shared.”

Dr. Lawler continued stating that “the aim is to create a type of cancer genomic internet. Imagine if we could create a searchable cancer database that allowed doctors to match patients from different parts of the world with suitable clinical trials. This genetic matchmaking approach would allow us to develop personalized treatments for each individual's cancer, precisely targeting rogue cells and improving outcomes for patients.”

The findings from this study were published recently in Nature Medicine through an article entitled “Facilitating a culture of responsible and effective sharing of cancer genome data.”

“This data sharing presents logistical, technical, and ethical challenges,” Dr. Lawler stated. “Our paper highlights these challenges and proposes potential solutions to allow the sharing of data in a timely, responsible and effective manner. We hope this blueprint will be adopted by researchers around the world and enable a unified global approach to unlocking the value of data for enhanced patient care.”

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