Public Lab Research note

Could decentralization assist in handling personal health data?

by liz | January 21, 2018 00:23 21 Jan 00:23 | #15575 | #15575

There are a few things i have in mind in asking this question,

  • One, handling personal health data appropriately is pretty tough to actually do, for example check out what the SmartForm team is encountering in their app development process: https://github.com/publiclab/SmART-Form/issues/12
  • Two, a lot of folks working on data justice in all forms are working on decentralizing data storage (such as with IPFS, the interplanetary file system -- what a great name!).
  • Three, I noticed that Tim Berners Lee's new project at MIT (https://solid.mit.edu/) is about decoupling personal data from applications and i'm wondering if anyone has any insight on it? Are there any other relevant projects we could be thinking about?

1 Comments

  
Comment Author Profile Picture nshapiro commented about 6 years ago

I think the simple answer might be: in the long run, very possibly yes! but its not yet technologically feasible.

From matt zumwalt at IPFS:

in order to achieve HIPAA compliance on a decentralized network you need (as a baseline) 1. a HIPAA compliant regime for encryption, decryption, and key management and 2. HIPAA compliant facilities for storage. Protocol Labs will start pushing for someone to tackle the first part (encryption, etc) soon, but it might take s very long time to implement and audit

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