As an extension of my own research and consulting on big data project planning and management, I wanted to improve my understanding of how data governance and program management practices impact how medical and health data are used.
I’m fairly “old-school” when it comes to planning and building information systems. That is, first you decide what your requirements are and what services you need to provide, then you decide which technologies you need to adapt, develop, or purchase to help you meet those requirements.
We see how the current web of licensing agreements is hobbling cable TV operators as they find themselves having to compete more and more with web based streaming services. Isn’t it also possible that similar restrictions regarding health data and metadata might provide similar challenges to creating new and beneficial products and services from shared data?
To appreciate some of the implications of the recent proposal by the International Committee of Medical Journal Editors (ICMJE) to make consideration of journal article acceptance contingent upon the author’s agreement to share de-identified clinical trial data with other researchers, as reported by NPR, some context is appropriate.