[Openid-specs-heart] HEART stepping stones

[Adrian Gropper]

Hello John,

There's no need for you to take my perspective personally.

"Data created fully by the patient" seems to be urging us to down-scope
HEART to the non-HIPAA domain.

Adrian

On Sun, Apr 19, 2015 at 5:21 PM, Moehrke, John (GE Healthcare) <
John.Moehrke at med.ge.com> wrote:

> 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
>



-- 
Adrian Gropper MD
Ensure Health Information Privacy. Support Patient Privacy Rights.
*http://patientprivacyrights.org/donate-2/*
<http://patientprivacyrights.org/donate-2/>
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