[Openid-specs-heart] HEART stepping stones

[Adrian Gropper]

John, I find your perspective both paternalistic and unscalable.

US healthcare is awash in lack of transparency and the result is $1Trillion
of unwarranted care. It's paternalistic and incredibly self-serving to
presume that just because the institution has been given a right to use
patient data without any accountability as long as the data is for
Treatment, Payment, or Operations or De-Identified, or "Break the Glass",
or prescription drug monitoring, or just plain lack of segmentation for
access, that it's good policy. The current regulations are the result of
heavy and effective lobbying by a very well organized industry trying to
protect its secrets by avoiding the HIPAA accounting for disclosures and
and patient right of access because they're "too hard". Think of HEART as
trying to fix the "too hard" problem.

Your perspective is also unscalable as more and more health-related data
originates in wearables as well home and environmental monitors, and then
ends-up in trans-national analytics completely outside of the HIPAA regs.
It's also unscalable as patient data such as genomes can no longer be
collected under informed consent because nobody has any idea of how your
genomic information will be interpreted three years from now and how that
interpretation might affect you or your children. It's also unscalable as
the ability to promise de-identification for research becomes less and less
realistic.

The simple fact is that surveillance, data processing, and data storage is
now effectively free compared to the economic value of the patient data.
Rent-seeking-behavior by politically astute institutions has been effective
for the past few years but the natives are getting restless. If you want to
read more:
http://thehealthcareblog.com/blog/2015/04/16/last-chance-for-meaningful-use/
and
I hope you make the comments above on the blog.

Adrian
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