[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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