Interoperability
FROM THE PATIENT ’S PERSPECTIVE
Setting a bit of Context
In my experience
◦ Most patients have no idea what that it is and no idea they need it
◦ We experience roadblocks and often don’t know why
◦ Often don’t try to solve them or try to help
◦ We just excuse ourselves from participation
◦ Because we just don’t understand
◦ I’ve managed Allergies & Asthma for years and… even I didn’t understand
◦ Background as CIO for a global company… I didn’t see interoperability issues
◦ Reality is… most of us don’t do our part in healthcare and we don’t know it
◦ I’m a decent example of the ignorance that needs guidance
A Strange Moment of Clarity
It was THIS moment that I
began to take my healthcare
seriously
Learned the hard way that I
MUST participate to reach
desired goals
Had a GREAT medical team at
Intermountain to teach me
that
Realizing the Complexity
Difficultly in coordinating care and reaching goals
◦ My own experiences (During Recovery and after)
◦ Dealing with multiple issues and doctors across several facilities
◦ Making sure each sees the whole story and progress is time consuming
◦ I actually tried and botched it…
◦ Interplay with meds and treatment plans is problematic and error-prone
◦ Antibiotic from one doctor interacts with steroid from other doctor
◦ Actually happened and I was sidelined for a few months
◦ Coordination seems to fall on me, yet I don’t really have the right access and
effective tools
◦ So-much-so… I built my own tools to try to help coordinate
◦ With a Boeing software engineering background, built it towards standards
◦ Need standards to make effective tools
Realizing the Complexity
Difficultly in coordinating care and reaching goals
◦ My mother’s experiences (Support Person for Grandmother)
◦ Difficult care coordination for aging grandmother
◦ Same issues that I experienced plus…
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All are starting to offer a patient portal – too many in fact
Information in each of these is different
Many disconnected tools requiring unique accounts for each
Frustration and overload for my mother and me too “as help-desk”
◦ I’m missing work to fly home next week to help
Realizing the Complexity
Difficultly in coordinating care and reaching goals
◦ Experiences of friends (Support Person for parents)
◦ Difficult care coordination for aging parents and chronic
conditions
◦ All have the same problems as me and my family
◦ With 2 friends in particular, it has become nearly a full-time job
◦ They miss work often and struggle with keeping care in order
Realizing the Complexity
Summary
We often find ourselves as the weak member of the care team
We often abandon care and/or choose another doctor
◦ This doesn’t solve the issue
All of this creates barriers to real patient engagement and
ownership
Pushing for Engagement
My Personal experience is (a simple observation I realize)
◦ Lower barriers = more engagement and ownership =
better outcomes
◦ When it is difficult to see the big picture, patients don’t do their
part
◦ We often don’t understand that we are not doing our part
◦ It took a critical event to motivate me to engage
◦ Probably not the best catalyst
All is not Lost
Studies show it’s getting more visibility
◦ By providers – From study published by The Economist in 2015
◦ 65% of healthcare leaders (private sector) feel greater access to medical information will
dramatically improve health outcomes
◦ By vendors and tech companies – From study published by research2guidance in 2014
◦ The number of mHealth apps published (iOS and Android), has more than doubled in only 2.5
years to reach more than 100,000 apps (Q1 2014).
◦ By patients – A study published in JAMA 2011 outlines these patient priorities
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Quickly restoring health when ill
Timeliness
Hope & certainty (want to know options & be hopeful)
Continuity, choice & coordination
◦ We see patient interest in our system too
And the Survey Says…
For those that are aware of the situation we seem to want the
same things and have the same goals
Need more visibility and education regarding the need
and benefits
Need at least simple tools based on standards so they are
effective
It is Time to Make a Difference
My personal experience (again)
◦ Not many patients will help with low-level details
◦ We will use approachable, interoperable tools to do our part
◦ We don’t need highly complex solutions to begin getting involved
◦ We want to engage but need some guidance and basic structure to start soon (Simple Use Cases)
◦ There good signs (observed during my recent involvement)
◦ I notice an increase in patient involvement
◦ I notice many of the same people in these overlapping circles
◦ I notice strong motivation and incredible expertise
◦ Seems this is the right “group of groups” implement something that is forward-looking…
then evolve it before it gets too diffuse one-off solutions