On the theme of Patient Consents, I put one of the documents that John suggested into modular format.  The organization of the document follows the original, with meaningful names for the various sections based on my hunches.  The names for roles are not yet meaningful, just placeholders.   

Click "Document"

http://source.commonaccord.org/index.php?action=source&file=Wx/ca/ocrebonline/Templates/COG-OCREB_Consent/v2015-Jun-29/0.md 

On Tue, Jul 12, 2016 at 11:23 AM, Eve Maler <eve.maler@forgerock.com> wrote:
http://kantarainitiative.org/confluence/display/BSC/2016-07+%28July+2016%29+Meetings#id-2016-07(July2016)Meetings-TuesdayJuly12

Attending: Thomas, Eve, Jim, Scott S, Don, Marc, Philippe, Thorsten, Ann, John W

The May 23-24 event at MIT, variously called Digital Contracts, Identities, and Blockchain and Digital Identities, Contracts, and Blockchain, had some notes as output. Here are relevant links:

For a candidate use case, Jim proposes: Patient consent, in a context of 3-4 countries – e.g., including France, Germany. Leverage the GA4GH (Global Alliance for Genomics and Health) and genetic research. Jim has been discussing this use case with Bart Suiches of Philips Blockchain Lab. Would this be about storing consents? The GA4GH folks have a committee that created a model data sharing consent form in CommonAccord. There's capacity for it to be signed.

Would the Consent Receipts work be able to handle a machine-readable representation? It might need to be extended. This would be a good use case for extensibility for that spec.

Culture might be the biggest barrier around consent – IRBs and equivalents would have trouble conceiving of consent as anything but a one-way door. John notes that there are six different ways to get approval to process data, and only one of them is consent. John recommends narrowing down this as a use case a bit, since it involves research and IRBs and such and takes it out of the full health regulatory environment (at least in the Canadian system). This is really a "health research" use case more than a "healthcare" use case, as it stands.

AI: John to share research consent templates with Jim/the group.

On Thursday, Scott will present a sample use case template into which we can fill use case content. Everybody should take the opportunity to get familiar with the linked material above, and start to think about their own use cases they'd like to collect.

Eve Maler
ForgeRock Office of the CTO | VP Innovation & Emerging Technology
Cell +1 425.345.6756 | Skype: xmlgrrl | Twitter: @xmlgrrl
ForgeRock Summits and UnSummits are coming to Sydney, London, and Paris!


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