Excerpt: We now know that breast cancer is not one disease. What works for one person might not for another: There is no one “cure.” We are each, in effect, one-person clinical trials. Yet the knowledge generated from those trials will die with us because there is no comprehensive database of metastatic breast cancer patients, their characteristics and what treatments did and didn't help them. In the Big Data-era, th…
Government regulation of how your personal information is created and stored makes such a database infeasibly difficult to create and maintain. The regulation is good, in that it protects an individual's privacy from those who could harm them with it (for example, the insurance industry, the paparazzi, your employers), but it also harms initiatives which aim only for good. Unfortunately, we have to account for the wo…
However, I posit that it is a lack of government regulation that has allowed health IT vendors to take no responsibility for supporting standards that enable data sharing across care settings. Every person in ill health deserves better study and care than we currently provide.
These problems are indeed well understood by some of us in healthcare, the details of a US 'Interoperability Roadmap' are available at the below link. Please take a moment to see where we are now, where we are headed, and how you might contribute.
http://www.healthit.gov/sites/default/files/nationwide-inter...