You can’t do it alone: Why data sharing is crucial to personalized medicine

by Adrianna Gregory

Applications of personalized medicine are getting more impressive every day. Take the example of the research team that recently identified 13 individuals from a group of 600,000 who, despite having a mutated gene that causes a serious or fatal disease, are healthy adults today. Isolating these individuals and understanding how they differ from others with the same gene has the potential to help doctors develop new therapies, or even cures, for these illnesses.

Research like this requires massive amounts of information that cannot be gathered by any single organization. But rigid institutional cultures and regulations often stand in the way of successful data sharing. Almost everyone we interviewed for our hot-off-the-press report on personalized medicine talked about the need for more collaboration across organizations—and about how hard that is to accomplish. According to Dr. Eduardo Sotomayor, director of the George Washington University Cancer Center in Washington, DC, “Changing the culture around data sharing remains one of the most daunting challenges in personalized medicine.”

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Our study emphasizes the importance of technology to personalized medicine—none more so than Big Data, as the visual above shows. But all the analytics technology in the world is useless if researchers are unable to work together to get the information they need. The pressure is on for organizations to develop the cultures and collaboration strategies necessary to make widespread information-sharing a reality. The future of personalized medicine depends on it.

Adrianna Gregory is an associate editor at Oxford Economics. She worked on the Healthcare Gets Personal program with deputy director of Thought Leadership Edward Cone.