Blockchain, Cystic Fibrosis and Linnia
I want you all to know we are looking into the Blockchain company Ethereum and this email suggests we have similar goals.
Currently: 781 of you have taken our survey at www.cftechnology.org and 90% agree: “We should be paid for our valuable data.”
Read how the missions match up nicely…
“Thanks for reaching out, and I’m glad you and Joe were able to connect. As he may have told you, Joe (Lubin) launched ConsenSys after co-founding Ethereum. The firm’s mission is to build protocols and applications that leverage the emerging blockchain infrastructure. Two years after its launch, ConsenSys now numbers 450 people and over thirty incubated “spokes”, or blockchain ventures. Linnia is the healthcare spoke.
Our thinking at Linnia is very much in line with your objectives. We aim to empower people to take ownership of their lifetime longitudinal data. This means being able to share it with their own communities, non-profit researchers, or with enterprises that offer the right incentives. Our architecture is such that we are a “data protocol”. That is, any app or enterprise can call on a user’s data, but only with the user’s expressed permission for each individual disclosure. Similarly, users can download data from apps to add to their longitudinal data stream through the protocol. Linnia is a repository where they can keep their collect and keep their data safe and private — encrypted — without relying on a central authority that may have its own agenda (i.e. selling de-identified data).
We believe owning our data should be our natural condition as human beings. Enterprises stand to benefit from that data, and a share of those gains should be shared with the individuals that generate it. In the near future, this statement should be uncontroversial. However, it isn’t only about monetary benefits. The main advantage stems from enabling innovation. With enough data collectively generated and shared, disruptors will generate new insights and treatments that improve our well being.”