James Hazard: I'm thinking of an element in GA4GH consents that asks if the data user can recontact the data subject for further permission
James Hazard: does Notice, Notification, Consent include also a cycle of renotification and reconsent? E.g., you permitted us to ask you for further permission. And notices includes notices of results, or breach, etc.??
Xiaohu: notices have different classifications; terminology (as usual) needs to be clarified
James Hazard: the lawyer comes in when something goes wrong – it needs traceability and auditability
presentation of a pharma scenario
Paul Knowles
Paul K - presented a Mickey Mouse Model (VJ–AdvCIS_use_case_pk.pdf), a model for a safe and secure data sharing economy.
Participants agreed on that this use-case is very representative and powerful and have shows keen interest in adopting it for the group.
Tom J: Within us healthcare federation, Kantara is proposing that the user should know that the party is a "Covered Entity", that there are a set of rules that the receiver has agreed to follow before the user is able to give consent. Exports of data beyond covered entities is a more deliberate process that the user must follow. I would hope that you insist on some multilateral federation of federations that can result in user knowledge of the continued protection of the user data. → VJ: healthcare may need to prove who they are à kind of a federation
discussion
Potential requirements identified for a receipt:
receipts need a strong identifier that may need to outlive the local transaction, i.e., it may need to set a context that is later invoked such as when re-consent is required or the user needs to be notified about a past consent action. in other words, it may need a consent lifecycle identifier that persists over time until revoked
receipts should hold information about all the context necessary to later invoke it
receipts may need to have the identity of the parties and that identity may need to be verified
receipts need to be a tool in themselves to support traceability and auditability
if a receipt has a notion of session/lifecycle, it may enable scheduled/batched consent where the user may not need to provide consent at the precise time but it comes from a past "batch" action (say, user agrees with a set of preferences that are reused over time)