I am a bit of an astronomy buff. When my kids were younger, I had an eight inch reflecting telescope I would set up in the backyard. My kids and I would invite other families in the neighborhood to look at the night sky. I recall one evening, we talked about the night sky while I was setting up. The constellation Orion was particularly beautiful that evening. We discussed about how the stars that make up Orion’s belt, legs, shoulders and sword, tell us a story we would not understand if we just looked through the telescope at each star separately. We still wanted to look through the telescope (Orion’s sword was particularly interesting), but looking at the constellation as a whole told us an additional story. The whole was greater than the parts.
Flash that concept forward 20 years. Holden Comprehensive Cancer Center has recently become a member of the Oncology Research Information Exchange Network or “ORIEN” (note slightly different spelling). ORIEN is a national initiative among several leading cancer centers that promotes collaboration to drive cancer research, development and discovery of treatments, and cures for cancer.
Patients who are willing to participate in ORIEN provide consent to participate. The cancer centers then gather and share information about that patient’s cancer: including clinical information and very complex details about its molecular makeup. We provide this information in a consistent format (a major challenge since each cancer center has been collecting this information using different systems) so it can be placed in a single gigantic database. This information, collected from 16 different cancer centers and thousands upon thousands of patients, is then available to ORIEN partners for research. It allows researchers to identify patterns that would not be discernable by looking at information gathered by each cancer center separately. These patterns can then lead to new approaches to cancer therapy.
The neighborhood kids appreciated the beauty of Orion without knowing the names of the individual stars. In the same way, the information in the ORIEN database is de-identified so researchers do not have access to the patient names or identities of those who provided the information. Importantly, ORIEN does however, allow us to get back to patients if we identify a potential clinical trial that fits with their particular cancer. Researchers can use that information in aggregate to accelerate cancer research. ORIEN will help us understand the big picture, and this, in turn, will help us understand what we are seeing when we examine each patient through our metaphorical telescope.
Whether we are talking about ORION or ORIEN, what is really exciting is the relationship between the whole and the parts. Think about that then next time you gaze up into the night sky to look at both the patterns of the constellations and individual stars. We will do the same as we study the patterns we reveal through ORIEN and use that information to help our individual stars – the patients we serve.
If you would like to learn more about ORIEN, visit their website here.