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TLDR: TBL's personal datastore proposal (Solid) is a non-starter for medical records in a healthcare context. (In the USA. See mea culpa at end.) Why: How does

TLDR: TBL's personal datastore proposal (Solid) is a non-starter for medical records in a healthcare context. (In the USA. See mea culpa at end.) Why: How does a patient grant access (consent) if they are incapacitated? Like during an ER visit? More: How does a patient manage that consent for all the other care providers? Can a patient ever retract the consent? Source: Implemented 5 regional healthcare medical records exchanges in the mid-aughts. My teammates handled the web portal for accessing same data. The "break the glass" edge use case, where care providers bypassed the consent, was ~80% of daily usage. Because that's the reality of healthcare. Mea culpa: Haven't yet found the tech specs for TBL's Solid. Maybe it does something new. Like translucent data store with centralized key authority. (Something we considered; would be practical at the NHS, where patients have GUIDs.) I reserve the right to change my position.

specialist 6y ago
Ok. Found the Solid FAQ link down thread. https://solidproject.org/faqs https://solidproject.org/faqs After skimming, PODs sound a bit like IPFS. Intriguing? I'll have to ponder. It'll take some effort to work thru some use cases, see how PODs could line up. There's so many different types of care, each with its own gestalt (for lack of better term). Just from memory: Clinic (visit-based, episodic, aka encounter), on going care (chronic conditions, kidneys, cancer), emergency care, ambulances and EMTs, continuity of care stuff (more like a journal or diary), delegation and consults, ad nauseam. This list is only meant to illustrate that interaction patterns for consent (grants & revoke), access, and life spans are many and varied. But just know ahead of time that I'm not optimistic that Solid & PODs bring anything new or practical to the table.
- pwdisswordfish4 6y ago
  > After skimming, PODs sound a bit like IPFS. Bad takeaway. Solid is basically the principle of, "Hey, don't store my data on your servers. Store it on mine."

specialist 6y ago

Ok. Found the Solid FAQ link down thread. https://solidproject.org/faqs https://solidproject.org/faqs After skimming, PODs sound a bit like IPFS. Intriguing? I'll have to ponder. It'll take some effort to work thru some use cases, see how PODs could line up. There's so many different types of care, each with its own gestalt (for lack of better term). Just from memory: Clinic (visit-based, episodic, aka encounter), on going care (chronic conditions, kidneys, cancer), emergency care, ambulances and EMTs, continuity of care stuff (more like a journal or diary), delegation and consults, ad nauseam. This list is only meant to illustrate that interaction patterns for consent (grants & revoke), access, and life spans are many and varied. But just know ahead of time that I'm not optimistic that Solid & PODs bring anything new or practical to the table.

pwdisswordfish4 6y ago
> After skimming, PODs sound a bit like IPFS. Bad takeaway. Solid is basically the principle of, "Hey, don't store my data on your servers. Store it on mine."