We’re looking at how to explicitly manage information ownership within an information sharing economy.
One of our ideas is to create extensions that can be used to record data controller and permitted data processors for FHIR resources.
Is anyone aware of anything similar within the UK?
Would anyone be interested in contributing to development of these extensions?
I’m very interested in how these relationships and permissions are going to be managed as information sharing becomes more complex, so I’d be very keen to help out and contribute, definitely.
I wonder if regional data sharing projects like Endeavour Health, Hampshire Health Record, and Great North Care Record would be interested too. I have contacts at all those organisations and can bring them into the discussion if required.
Thanks @pacharanero - David S has already been in touch via INTEROPen, but if you have any contacts with the other projects that would be great.
No problem. I’ve invited @nick.booth (GNCR technical/clinical) and @AmirMehrkar (HHR) to the thread.
Thanks for the invite Dunmail. I’d be interested in more information on this. We might also be able to provide you with an opportunity to talk to clinicians interested in this at a NE event, Nick
Thanks Marcus & Nick.
The scope of my proposal is limited to creating extensions so that we can label resources that are shared. The mechanism(s) by which those labels are derived (Consent, DPA, GDPR, Caldicott, Data Sharing Agreements et al) are clearly important, but would a) significantly inflate the amount of work that needs to be done b) depend on a common understanding of the legal framework for data sharing (as this doesn’t yet exist).
The scope would therefore be extensions to record:
David Stables (Endeavour) and Tony Thorne (Vision) have expressed interest in helping.