This page records the Discussion Group's meeting notes for August 2016. We meet Tuesdays for 30 minutes at 7:30am PT / 10:30am ET / 3:30pm UK / 4:30pm CET. We meet Thursdays for 30 minutes at 11am PT / 2pm ET / 7pm UK / 8pm CET. US times are normative during daylight saving time changes. We use Kantara Line A (US +1-805-309-2350, Skype +99051000000481, international options, web interface, more info, code 4022737) and http://join.me/findthomas for screen sharing. See the DG calendar for our full meeting schedule. Previous meeting minutes are here: July.
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Thomas: Lets complete current-uses cases. Looking at the patient data sharing there at least 2 cases we could claim. (1) The patient consent is captured on a blockchain (which acts as a simple public notary); (2) Pre-frabricated Prefabricated contracts for accessing data, using data, sharing results (etc) is represented as a smart contracrtcontract. John stated that privacy of the patient and unlikability are important aspects. Thomas: this requirements for privacy or anonymity is also true for financial transactions. Kathleen/John agrees.
Jeff: Can SC contain all the info regarding all the possibilities, turn around time, etc. Is it practical, deployable, or even untenable. Currently they use databases etc for this purpose. Kathleen: Precision Mdecinie requires precise patient identification.John: we need to evolve slowly into complex cases. Tease out components. John: there is complexity as to how researchers view data and management aspects of studies/trials. Each project has admins, assistants, CROs, org that collect research info. Most orgs have standardized consent forms. What is we move these into a slightly changed format so that it can be used on a blockchain. This allows the (new) infrastructure to develop gradually. Jim: such a format is what we (Jim) is working on. Using SC to automate some of the functions. Must work on/off the blockchain. Address complexity thru layering.
John: this is ok, but it doesn't convey the transparency of usage back to the data holder and patient.
Thursday August 18
Agenda:
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The biggest question: Is there a role for the blockchain? The three lightbulbs highlight the particular steps where this comes into play. (Scott suggested to the chat that the lightbulbs in the recent edit can be broken out into individual use cases. As mentioned on the call, the use cases will form an ontology, these would be different instances of “record X on a ledger”, with a different X for each lightbulb.) Thomas notes there is a bit of a crisis of repeatability in research. Could that be addressed with the new technologies somehow? John suspects that this is where putting the protocols (the descriptions of the studies) themselves on the blockchain would be more productive, and this is where his mention of a "predecessor or stereotypical case" of Human Research Consent could encompass that solution. He points to https://clinicaltrials.gov.
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