[Openid-specs-heart] Draft HEART Meeting Notes 2017-01-16
Sarah Squire
sarah at engageidentity.com
Mon Jan 16 22:07:08 UTC 2017
Attending:
Nancy Lush
Eve Maler
Adrian Gropper
David Batchelor
Edmund Jay
Glen Marshall
Jim Kragh
Justin Richer
Sarah Squire
Thompson Boyd
Tom Sullivan
Eve:
Claims gathering relies heavily on the use case we’re looking at. Nancy has
done a lot of work on focusing in on specific use cases.
Does anyone have more scenarios they would like to include?
Adrian:
I’m interested in talking about managing elderly family patient care. I
also promote the HIE use case around the experience of the physician.
Glen:
I’d like to bring up three variants on the clinical research use case. The
first is where you are testing a new intervention or drug that may not have
a code yet. The second is a “pragmatic trial” where they are retesting the
efficacy of existing interventions. The third is meta-analyses which
combine multiple studies to create a large statistical base to
reinvestigate things.
Eve:
Do we have a tension between “patients” and “subjects”?
Glen:
The question of informed consent is very patient-centric. Patients
sometimes give blanket consent without an understanding of what they were
agreeing to.
Adrian:
UMA is especially appropriate for genomic research where informed prior
consent is impossible.
Glen:
In each of these, the role of the patient is different. Sometimes it’s
one-time, sometimes it’s ongoing.
Adrian:
I would like to list bio banks as a fourth list item.
Eve:
Behavioral health has a different set of impacts. What are the specific use
cases that Alice has?
Nancy:
I would begin with the fact that a lot of behavioral health data is not
shared. Especially sensitive data.
Eve:
Another use case would be delegating access to a caregiver or advocate.
Eve:
We need to build up the topology of the ecosystem. I’m thinking about
putting together an UMA spiral for each use case.
Nancy:
Are people interested in taking sections?
Glen:
I’ll do the clinical reasearch ones.
Nancy:
Adrian I’ll give you C
Eve:
I’d like to add consumer IoT data access sharing. I’ll take that one.
Sarah Squire
Engage Identity
http://engageidentity.com
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