[Openid-specs-heart] Greetings and Introduction

Danny van Leeuwen danny at health-hats.com
Tue Jul 21 11:53:38 UTC 2015

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
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

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

*Blog www.health-hats.com <http://www.health-hats.com/> discovering the
magic levers of best health*
*Twitter **@healthhats*
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