Alice RathjenA Request of the Rare Disease Community“People just want to connect with people who are going through what they’re going through, because rare disease is so isolating…Oct 16, 20191Oct 16, 20191
Alice RathjenHealth data can’t be extracted like oil. It needs to be managed like a natural resource.Health is a natural resource, something that’s belongs to a person, a community, and ultimately a country. Health data is a national…Feb 13, 2019Feb 13, 2019
Alice RathjenTime to start talking about data ecology?For long time we’ve treated the web as if it was an infinite space. Perhaps it’s not. Perhaps what we’re currently doing on the web is not…Sep 3, 2015Sep 3, 2015
Alice RathjenWill Francis Collins Hammer Out Health Data Ownership?In the final version of the Precision Medicine Initiative, what if Francis Collins hauls out his guitar and sings if “I had a hammer”, only…Aug 3, 2015Aug 3, 2015