[Openid-specs-heart] HEART stepping stones

[Moehrke, John (GE Healthcare)]

Hi Adrian,



Interesting misrepresentation of what I said. I am disappointed that you feel 
it necessary to misrepresent what I said. I am also disappointed that you feel 
it necessary to bring in other negative topics that I said nothing about. I am 
trying to find ground that we can progress forward on; while you seem to be 
just wanting to make personal assaults.



Looking for the constructive message in your comment, I think you are 
suggesting that we scope our efforts to the flow of information from the 
patient possession to points-elsewhere. I am fine with that kind of a scope. 
It also avoids the issues I was bringing up.  I very much agree that data 
created fully by the patient is, and should be, totally controlled by the 
patient.  This scope also avoids the concerns that encumber healthcare 
provider environments:  Medical Ethics concerns, Safety concerns, and concerns 
of wrongful disclosure.



John







From: agropper at gmail.com [mailto:agropper at gmail.com] On Behalf Of Adrian 
Gropper
Sent: Sunday, April 19, 2015 12:42 PM
To: Moehrke, John (GE Healthcare)
Cc: Eve Maler; openid-specs-heart at lists.openid.net
Subject: Re: [Openid-specs-heart] HEART stepping stones



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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