[Openid-specs-heart] What data Alice might want on a virtual clipboard or common data set

[Adrian Gropper]

Hi Danny,

The conversation is not out-of-scope. It is exactly the kind of
sophisticated use-case that we need to actually reach consensus on the
fundamental features of HEART such as a patient-specified authorization
service and notification.

Just because Care Planning is not a document or a FHIR resource doesn't
mean it's out of scope for HEART. We can assume that some entrepreneurial
startup or sophisticated patient community (like the diabetes folks with
their huge success in managing information technology for their use-cases)
will want to offer an app or service along the lines you suggest.


*Will they be able to do that if all of the other providers of service to
Alice are HEART-compliant? *
That's what your use-case means to HEART.

Adrian

On Sat, Jul 30, 2016 at 11:55 AM, Danny van Leeuwen <danny at health-hats.com>
wrote:

> Interoperable data set still appear focused primarily on billing
> requirements and not clinical needs.
>
> The biggest thing missing is *care planning*:
>
> What are Alice's health goals?
> Who's doing what, by when?
> How's progress?
> What are Alice's health risks and how can she avoid them and manage when
> they aren't avoidable?
>
> For example:  Alice has high blood pressure (probably, but not for sure in
> the problem list). Her health goals are:
> 1. Settle on medication(s) with manageable side effects
> 2. Take that medication as prescribed
> 3. Take her blood every day and send it to her PCP
> 4. Risk is dizziness, which she still has every day
>
> I understand that this is out of scope: this data project is about the
> Common Data Set, authorizing and being notified about sharing that data.
> Few EHRs do a good job collecting, managing, or sharing care planning data
> among people at the center of care. It's fluid, not static. (look how poor
> medication data is).  It's just so frustrating to me that there really is
> no place to have the conversation about '*what data?' I tried to have it
> on the Blue Button Plus Data Work group and failed miserably. Any ideas
> from you good folk?*
>
>
> --
> Danny van Leeuwen
> 617-304-4681
>
> *Blog www.health-hats.com <http://www.health-hats.com/> discovering the
> magic levers of best health*
> Twitter <https://twitter.com/HealthHats>
> LinkedIn <https://www.linkedin.com/in/healthhatsdannyvl>
>
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