[Openid-specs-heart] 7-27-2015 chat capture from HEART web discussion - Casey Quinlan

Casey Quinlan - MightyCaseyMedia casey at mightycasey.com
Mon Jul 27 21:00:08 UTC 2015


Me:
>From the patient perspective, we (patients) are still the last group to be
"invited in," i.e. the ecosystem is set by all other players having their
requirements met before a person/patient is asked "how would you like to
access your data, and certify your credentials?"

Me:
IOW, I have yet to hear anything that flips the current "system sets
security" into "patient is in control of his/her data as primary actor."

Me:
I'm gon' sound like a simpleton, but AFAIC patient data conversations,
which to date have not included patients/end-users in active development of
the infrastructure/UI/UX at all, are almost pointless if the phrase
"patient centric" is in use. Ain't patient centric if patient is not
primary assigner of rights to use of said data.


   -

   You make a good point - however, profiling use of OAuth on its own is,
   in fact, in scope...
   -
   Eve Maler to Everyone

   it's a stepping stone
   -
   Me to Everyone

   Understood. But as a global-patient voice for patient access to their
   own data, our needs/issues have NEVER been primary in development of
   infrastructure, protocols, semantic profiling, ANYTHING in this arena.
   Which is why patient engagement is still a unicorn.

Casey Quinlan, the "Mighty Mouth"

*Mighty Casey Media* <http://mightycasey.com/mighty-mouth-blog/>

*Cancer for Christmas <http://cancerforchristmas.com/>*

Twitter <https://twitter.com/mightycasey>

LinkedIn <https://www.linkedin.com/in/mightycasey>

casey at mightycasey.com

+1-804-467-5716
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