[Openid-specs-heart] Greetings and Introduction

Eve Maler eve.maler at forgerock.com
Wed Jul 22 00:27:02 UTC 2015

Danny, I'll add my welcome. Great introductory note! You bring many useful
perspectives to the table. We've got both technical and health
subject-matter experts here, so when we deep-dive on one side, we do tend
to lose folks on the other side... Definitely put up a virtual hand and ask
questions. We're always keen to make efficient progress, but part of that
is avoiding *re*-doing work later just because we chugged too fast past an
issue that too many people remained fuzzy on.

*Eve Maler*ForgeRock Office of the CTO | VP Innovation & Emerging Technology
Cell +1 425.345.6756 | Skype: xmlgrrl | Twitter: @xmlgrrl
Join our ForgeRock.org OpenUMA <http://forgerock.org/openuma/> community!

On Tue, Jul 21, 2015 at 4:17 PM, Danny van Leeuwen <danny at health-hats.com>

> thanks. i'll start working on it. will take me  a couple of weeks
> On Jul 21, 2015 1:06 PM, "Debbie Bucci" <debbucci at gmail.com> wrote:
>> Danny,
>> Welcome and your use case would be welcomed.
>> The current use case list can be found on our wiki  - best to follow the
>> link on our resource page http://openid.net/wg/heart/resources/
>> Adrian's use case is up next -
>> https://bitbucket.org/openid/heart/wiki/Post-MI_Implant_and_Rehab -
>>  once we have fully explored the PHR <->PCP use case.
>> Glad to promptly post then add yours in the queue for
>> discussion/dissection behind Adrian - once we get there.
>> On Tue, Jul 21, 2015 at 7:53 AM, Danny van Leeuwen <danny at health-hats.com
>> > wrote:
>>> Attended my first call yesterday.  Somewhat over my head - some
>>> technical stuff.  I need to learn about OAuth. Is Alice a generic patient?
>>> Who's Uma?  I loved the *UI of the possible*. I thought all hour , *How
>>> will people be introduced to this tool? What will bring them back? Who or
>>> what will be their guide?* I'm coming back because someone asked about *patient
>>> goals*. When I speak and write I refer to the *people at the center of
>>> care. *This includes individuals and caregivers.  When I blog (
>>> www.health-hats.com weekly for 3 years) and speak people care about
>>> many things not often addressed by technical folk: one is personal goals.  *What
>>> am I, are we, trying to accomplish on my health journey?*  Certainly
>>> end-of-life choices is one, but more frequently it's less pain, less fear,
>>> more fun, managing my meds, hanging with friends and family, fitting in my
>>> clothes, getting to work, getting to the doctor, having love in my life...
>>> You get the drift - meaningful life. A person-centered tool needs to
>>> support and track my goals.
>>> A little bit about me:  I have multiple sclerosis, am a caregiver, a
>>> nurse, and VP for Quality Management at www.Advocatesinc.org. providing
>>> person-centered, community-based support services to about 23,000
>>> individuals and families with mental illness, addictions, developmental
>>> disabilities, autism, brain injury and other challenges in living across
>>> the care continuum: 24/7 group homes, assisted living, outpatient, family
>>> supports, community justice.I spent 4 years at Boston Children's leading
>>> the Patient/Family Experience initiative. I was a founding member of HIMSS'
>>> Connected Patient Committee and now serve on HIMSS Cost, Quality, and
>>> Safety Committee.  I've been a reviewer for a few years for PCORI and was
>>> just appointed as an inaugural member of their Communication and
>>> Dissemination Advisory Team (elected co-chair). I spent several years
>>> attending ONC's Blue Button Initiative on the Content Task Force.  I was
>>> successful there expanding the definition of *care team * to include
>>> family caregivers.  Completely unsuccessful trying to get 2 additions to
>>> the core data set:  what works for me when I'm in pain, and what doesn't?
>>> and what's works for me when I'm scared and what doesn't?  Although it's a
>>> no-brainer for people at the center, I couldn't even get it discussed. I
>>> was invited to speak at HIMSS14 and the World Medical Informatics
>>> Conference about *Caregivers and Health IT*.
>>> My take-away from the call yesterday was that I need to create another
>>> Use Case from the point of view of an individual with serious medical and
>>> behavioral health issues on medicaid and medicare receiving care from a
>>> managed care company.  Is there time in the flow of the team's work to do
>>> that?
>>> I'm honored to be on a team with you all and thank Adrian for
>>> introducing me to this group through Society for Participatory Medicine.
>>> --
>>> Danny van Leeuwen
>>> 617-304-4681
>>> *Blog www.health-hats.com <http://www.health-hats.com/> discovering the
>>> magic levers of best health*
>>> *Twitter **@healthhats*
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