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The Promise of Informatics-Enabled Research: The California Mastectomy Study

IntersystemsLike far too many women, I know what it means to confront the prospect of breast cancer. I spent the better part of a year in watchful waiting for what eventually proved to be a benign lump. Some of my friends participate in randomized clinical trials in hopes of being among the first to benefit from a promising new therapy. Some have passed away.

All have faced agonizing challenges sorting through options and confusing medical jargon, poring over statistical data they may or may not understand, and trying to reach a treatment decision in the midst of their fear.

A recent observational study reported in The Journal of the American Medical Association (JAMA) compared survival rates for several different treatment approaches to breast cancer. The primary finding picked up in the press was that the long-term survival rate for women undergoing bilateral mastectomy was not statistically different than that for women who chose lumpectomy and radiation.

I’m not going to outline the entire study – there are a number of good summaries available elsewhere. What particularly caught my interest was the way the study was conducted.

What excited me about the new study is that it is a terrific example of the secondary use of data for informatics-based clinical research. That is, information captured as part of the normal care process for a single patient is combined with information from an entire population segment in order to compare clinical alternatives.Continue reading…

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