Introducing CancerBase: A way to share personal medical data to help cancer research
Early this year, the Obama Administration announced a national Cancer Moonshot Initiative to “eliminate cancer as we know it” by accelerating innovative research.
This call to action was heard by Jan Liphardt, PhD, associate professor of bioengineering at Stanford, and Peter Kuhn, PhD, professor of medicine and engineering at the University of Southern California, who joined forces to create the CancerBase. Their goal is to overcome the difficulties of sharing personal medical information to facilitate cancer research.
“People all over the world already effortlessly share other kinds of information — pictures, movies, ideas, stories, tweets,” said Liphardt in a recent Stanford Engineering article. “Increasingly, they are using the same tools to share personal medical information.”
CancerBase provides patients with an easy-to-use method to share their de-identified health data worldwide. The data is then displayed as a global map of people with cancer, where different colored dots represent people with different types of cancer.
“So that’s the simple idea: A global map and give patients the tools they need to share their data – if they want to. They can donate information for the greater good. In return, we make a simple promise: When you post data, we’ll anonymize them and make them available to anyone on Earth in one second. We plan to display this information like real-time traffic data. HIPAA doesn’t apply to this direct data-sharing.”
For now, participants answer five basic questions such as: What is your diagnosis? Did your cancer metastasize? However, participants can propose new questions to be added to the database in the future.
This anonymized data is available to everyone through a PubNub real-time application. The project has only just begun with 532 participants so far, but Liphardt plans to acquire tens-of-thousands of members to create a viable database for cancer research.
“The dream is to have cancer-relevant medical data flow unimpeded around the world in seconds, so that everyone, wherever they are, can see and use this information,” Liphardt said.
This is a reposting of my Scope blog story, courtesy of Stanford School of Medicine.