Where does data come from? Have you had The Talk?
It's always interesting to see where data custodians and end-users think data comes from. We often hear that people believe “health data lives in the EHR”. While some health data lives in the EHR there are many sources of health data. Mapping out all the data locations with their type is no small task for an organization. As an armchair dataviz enthusiast (visual rabbit hole) I came upon this JAMA Article and appreciated how thoughtfully laid out this health data infographic was.
The opportunity to postulate questions based on access to this corpus of data is incredible. As we think about this, it is worth noting what should and should not be remixed. As a society how do we draw the lines and who is responsible when a line is crossed. Bringing the conversation out from the shadows into the light is a first step to developing an appropriately healthy and clinically effective view on data use. Let's build healthy solutions for rare diseases and be responsible participants (implicit or explicit) in our data ecosystem.