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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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 Medicine 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.
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Thomas: yes, lots of similarities. We need to tease-out common components and building block. Kathleen/John: there are 2 usages of blockchain: (a) for recording, and (b) for enforcing. One can live without the other. Incrementally can move forward with one or the other, not both. John: part of the research statement and agreement, it should call out that it has to make use of blockchain and SC in a given way. Transparency addresses through preconditions (e.g. pseudo-identifier) defined elsewhere. We just define the usage/functionality that it provides. Also satisifes clinical obligations wrt patient rights/autonomy. Katheleen: there's an org working on this called "Patient Choice" project. Kathleen will email URL.
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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