[Openid-specs-heart] Greetings and Introduction

Debbie Bucci debbucci at gmail.com
Tue Jul 21 17:06:41 UTC 2015


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>

> 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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> Openid-specs-heart at lists.openid.net
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